Conference Report

Introduction:

The National Educational Association of Disabled Students (NEADS) held its 20th anniversary conference “Creating Our Future: On Campus and Beyond” November 10th to 12th at the Delta Ottawa Hotel and Suites. Over 150 delegates from across Canada took part in the proceedings. Workshops included: Job Search Strategies: Competing in the Employment Market, Looking Into the Future of Post-Secondary Education, Creating Leaders for the Future and New Developments in Disability Studies. The conference also featured an exhibit area with the following companies: BMO Financial Group, Scotiabank, TD Canada Trust, IBM Canada, Microcomputer Science Centre, Alliance for the Equality of Blind Canadians, NEADS and the Accessibility Standards Advisory Council – Accessibility Directorate of Ontario.

We would like to offer our thanks for generous sponsorship of the conference to the following organizations: Equity Through Education/BMO Capital Markets; BMO Financial Group, Scotiabank Group (Platinum Sponsors); Braille Jymico, CHUM Limited, Delta Ottawa Hotel and Suites, TD Bank Financial Group (Silver Sponsors); Travel Cuts (Bronze Sponsor); and in-kind sponsorship from Jobpostings magazine. This conference was made possible, in part, by grant funding support from the Social Development Partnerships Program (SDPP), Government of Canada. This project was also funded by a contribution from the Canadian Council on Learning.

We are grateful to the members of the 2006 NEADS Conference Planning Committee for their commitment in developing the conference agenda and special events. Committee members are: Kim Gerritsen (Chairperson), Lena Cook, Jason Mitschele, Paulo Monteagudo, Rachael Ross and Mahadeo Sukhai. Jennison Asuncion provided dedicated, ongoing support to the conference team as an advisor and was involved with the planning of the 20th Anniversary Banquet. Thank you to Jennifer Gaulin who organized and coordinated volunteer services. Golden Planners provided all registration services before and during the conference.

The conference program was written and edited by Neil Faba, with assistance from Frank Smith and Chris Gaulin. Layout and design of the publication was completed by ALDI Design. Chris Gaulin, NEADS’ Website Architect, developed the conference website. InterpretCan completed the French translation. Alternate format production of conference materials was provided by Braille Jymico. This report was written by The Conference Publishers, edited by Frank Smith, Neil Faba, Jennison Asuncion and Jennifer Dillon.

Job Search Strategies Forum

Welcome

Jennifer Dillon and Jason Mitschele, NEADS

Jennifer Dillon and Jason Mitschele welcomed participants to the Job Search Strategies Forum workshop (JSS). JSS is a project developed by NEADS with support from BMO Capital Markets’ Equity Through Education program. Launched in August 2005, JSS is essentially a travelling road show of job search strategies workshops. Specialists take participants through the job search journey, helping them move from academic success to rewarding careers, as they follow their dreams. The November 11 workshop is the sixth in a series of eight across Canada.

Video: The Equity Through Education Program

The workshop opened with a video on the Equity Through Education program. The program’s aim is to improve access to education and training for people who have the capabilities, but who lack the support and means.

In May 2005, Equity Through Education donated $1.6 million to seven charitable organizations in Canada and the United States. NEADS was one of the beneficiaries. Established in 1986, NEADS has a mandate to encourage self-empowerment for post-secondary students with disabilities. Other beneficiaries that were highlighted in the video are the Foundation for the Advancement of Aboriginal Youth, the Canadian Merit Scholarship Foundation, and the U.S.-based Jackie Robinson Foundation.

The Job Search: Accommodation and Beyond

Stephen McDonnell, Senior Advisor, Diversity and Workplace Equity, BMO Financial Group

Stephen McDonnell began his presentation by emphasizing that a paradigm shift is occurring across Canada as a direct result of growing diversity awareness. This shift is not about legalities, but about changing perceptions and recognizing talent pools.

“Canada is facing a labour shortage and really needs you,” said McDonnell. “For the very first time, people with disabilities have a voice in our country and a major voice in the employment market.” He encouraged participants “to speak up, to learn how to use that voice, to be articulate.”

A new direction in the job search is emerging, McDonnell noted. Workforce diversity and inclusion have become more important. According to 126 major U.S. and Canadian companies, the top reasons for encouraging diversity include greater competitiveness in attracting talent; improved financial performance; reflection of changing workplace demographics; and increased understanding of or access to specific markets, clients, and consumer segments.

A 2004 study found that companies that had more women in senior management positions outperformed companies that had few women in such positions. Return on equity was 35% higher, and total return to shareholders, 34% higher.

Inclusive companies are better able to attract and retain talent and to scan and respond to their marketplace. Properly managed teams that reflect the diversity of the workforce engage in a stronger decision-making process.

The “talent argument” is strong. Diversity is a powerful magnet for recruitment, and the changing age demographics of the labour force argue for better understanding and mirroring of various groups. For example, in Canada, 6.7 million baby boomers will exit the workforce by 2021. Generation Y is estimated to represent 5.6 million people, creating an expected labour force shortage of 1.1 million people.

The “marketplace argument” is also clear. Companies that leverage diversity and that “mirror the market” will attract new customers and find new markets. For example, recent studies have showed that women control more than 80% of consumer and household spending and that visible minorities represent $76 billion in purchasing power; people with disabilities, $25 billion; and Aboriginal people, $24 billion.

McDonnell then spoke on accommodation in the workplace. The duty to accommodate is required both by the Canadian Human Rights Act and the Employment Equity Act, he said. Accommodation must be provided short of “undue hardship.” The entire company and its board of directors are accountable—not just the work unit. And in fact, the Supreme Court expects companies to anticipate a considerable measure of hardship in ensuring accommodation. However, emphasized McDonnell, people with disabilities must understand their own boundaries around disclosure; the only right that the employer has is to know their employees’ accommodation needs.

The business case for providing accommodations includes increased shareholder value through accessible service for all; an enhanced public image; service as a model for external organizations; ability to recruit and retain top talent; a motivated, healthy, and productive work environment; and market expansion, attracting more customers with disabilities.

Accommodation is “the obligation to eliminate disadvantage,” and it applies during recruitment, selection, training, career development, and ongoing employment. It does not affect employment decisions nor does it diminish an employee’s responsibility to carry out essential job functions. On the other hand, workplaces are expected to recognize each employee’s unique qualities, to respond to each person’s needs, and to respect each person’s privacy and dignity.

Employment accommodations for employees with disabilities include physical adaptations; human support; job modification; adaptive technologies, policies, and systems; and flexible work arrangements and scheduling.

And what about interaction with colleagues? Teamwork requires a recognition that accommodation is a joint responsibility, that no two accommodations are the same, and that accommodation is not absolute. Accommodations may involve technology or human support or both. They may evolve as technology or conditions change—for example, with aging.

BMO’s Staying in Touch program is an example of how much employers are doing to increase diversity, McDonnell said. The Staying in Touch program provides mentoring opportunities to college and university students with disabilities. McDonnell invited the participants to join this program if they feel they would like to be mentored by a BMO employee through e-mail.

McDonnell closed his presentation by encouraging the participants to stop by the exhibitors’ booths and to “help us help you find your voice for the future.” The theme of the day is “no longer about what you cost; the conversation is about what you bring.”

Making the Most of the “Informational Interview” as Part of Your Job Search Strategy

Aaron Marsaw, Lawyer, Department of Justice

Aaron Marsaw, a lawyer with a visual impairment, spoke about using the “informational interview” as part of a job search strategy. He began with a story about his own experience of networking and how his network grew as a result of sending thank-you notes to those who spoke with him when he was first looking for work.

Marsaw emphasized the importance of networking. It is about talking to people, asking questions, obtaining information, sharing experiences, and making connections. The informational interview is really just networking, he said, but in a structured way. And networking is something to be used throughout life and one’s various careers.

The informational interview has two main purposes:

• Gaining as much information as possible

  For example, learn everything possible about an organization, a particular line of work, job prospects, level of competition, labour market trends, courses and skills needed, and so on. An effective job search includes seeking information on how to target specific jobs and hidden job opportunities.

• Marketing yourself

  By asking questions and letting others know about your search for work and for information, you are, in a sense, making your availability for hire known. But rather than ask outright for a job, present yourself in the best light and leave an impression that can be shared throughout an organization. Contacts such as these can easily lead to job opportunities. However, you must still meet the qualifications for the job; hiring is never based purely on connections.

How to structure a job search and start up a network? Marsaw recommended researching professional associations, finding and contacting prominent people in the field, and being organized about who to contact and how to approach each person. The campus employment office and the Internet are valuable resources.

Start by sending a cover letter. Express an interest in learning about the organization and the person’s work, Marsaw said. Say that you will be in touch shortly to arrange a meeting, and then follow up by telephone within the specified period.

When conducting an informational interview, keep in mind the questions that you want to ask—for example, questions about the knowledge area and the physical place where you are interested in working. Try to meet face to face. If an in-person interview is impossible, settle for a telephone call. If a call is impossible, settle for e-mail. However, remember that attitude and body language can convey far more than a resumé alone.

Marsaw suggested meeting as many people as possible and researching as many organizations as possible. Ask questions that are valuable to your search and that show your knowledge. Ask about their experience, and answer their questions to develop a good picture for them of who you are and what qualifications you bring. Always ask for the names of two or three other people that you can contact, because that is how a network grows.

At the end of the interview, ideally your contact will ask for a resumé. And you may be asked if you have more questions. Always take advantage of this final opportunity to stand out from the crowd, to sell your skills, and to obtain more information of value.

Occasionally, the interview contact may not be interested. In that case, end the meeting after two or three questions, Marsaw recommended. Better to leave a positive impression than to extend an unproductive interview. But, no matter how minimally helpful the contact’s advice was, send a thank-you note, he suggested. Marsaw also encouraged participants not to get discouraged if the search starts off slowly.

The informational interview is only one part of a job search strategy, but it can be very effective. In fact, such an interview helped Marsaw find his job in the federal government. As a result of talking to people, his resumé was widely circulated, and he was hired for an unadvertised position.

Over the years, said Marsaw, your network will continue to build and serve as a valuable source of ongoing advice. Reciprocation is also important. “If someone asks you for an informational interview, never [avoid helping] them; always give what you can.”

The Government of Canada as an Employer of Choice

Carole Willans-Théberge, Lawyer, Privy Council Office

Carole Willans-Théberge, who has a hearing disability, spoke about opportunities for students with disabilities within the government of Canada.

Willans-Théberge began by speaking about the National Council of Federal Employees with Disabilities (NCFED), which she co-chairs. NCFED has humble, grassroots origins, she said. It began with just two federal public service employees with disabilities who wanted to work with other disabled people in collaboration with the government to make the workplace more welcoming and accessible across Canada.

NCFED’s constituency is federal public servants with disabilities. The six positions on its board of directors are filled by people from different regions across the country. Its achievements include holding two congresses (2002 and 2005) and starting up the NCFED Info Centre. The meetings were consultations that listened to the views of constituents and people with expertise and interest in the area. The Info Centre is a centre of expertise being developed by the government and the Public Service Alliance of Canada.

NCFED is currently working for access to accommodation for federal employees with hearing loss. In collaboration with Public Works and Government Services Canada, it is starting to provide American Sign Language, Quebec Sign Language, and print interpretations in the workplace.

Willans-Théberge next turned to her personal experience. She was called to the bar in Quebec in 1981 and had a rough start in the private sector. Lawyers are expected to be communicators, and especially because Willans-Théberge wanted to be a litigator, she was forced to hide her hearing loss to find an articling position. During her ten years in a private firm, she found it particularly difficult to do court work while constantly hiding her disability. Eventually her disability was discovered, and the firm said that it could not accommodate her.

But Willans-Théberge’s job loss turned out to be a wonderful opportunity. By coincidence, she met the president of the Canadian Hard of Hearing Association and learned that she did not have to be ashamed of her hearing loss. She was hired as a director in 1991 and learned about accommodations such as captioning.

“One good turn deserves another,” she said. In 1992, Willans-Théberge was hired by the Department of Justice as part of the National Strategy for the Integration of Persons with Disabilities. In 2005, the Privy Council Office hired her as part of its Career on the Move program aimed at helping visible minorities, Aboriginal people, and persons with disabilities move into management positions. Willans-Théberge noted that there is no shame in taking advantage of opportunities that level the playing field for people with disabilities.

The Public Service Commission of Canada has five federal student recruitment programs, continued Willans-Théberge. The Federal Student Work Experience Program is a primary vehicle for students who want to find temporary jobs within the federal government. She also mentioned Justice Canada’s Legal Excellence Program and recommended that students search the Internet for other placement and recruitment programs, in particular those available at www.jobs.gc.ca.

In terms of practical tips, Willans-Théberge encouraged students to self-identify, because identification now provides an advantage. There is no obligation to disclose, and by law an employer cannot ask a candidate to disclose a disability, but candidates should tell a potential employer what their accommodation needs are. “Ask for the right accommodation at the right time and in the right way,” Willans-Théberge said. Be courteous and constructive, and help find a solution if a problem exists.

Willans-Théberge also advised participants to network, to take responsibility, and to cover all the bases. “It’s no time to be modest!” she said.

In particular, if leadership is needed for a job, remember that volunteer experience counts. And, “when you go to an interview, look at people, shake their hands, be confident, and do the work you need to do to have self-esteem and to look like a person who knows what you’re doing.”

Willans-Théberge summed up by stating five “Golden Rules” to work and live by:

• Believe in yourself, because if you do not, nobody else will.
• Take your job (any and every job) seriously, just never take yourself seriously.
• Actively look for ways to volunteer, for challenges, or for other avenues to self-improvement.
• The journey is going to be difficult, but you can do it, one day at a time.
• No one owes you anything; the key to your success is in your hands.

Controlling Your Own Destiny: Self-Employment in Healthcare

Marlie Cappel, Student

Marlie Cappel is a 24-year-old student in her final year of chiropody (the science of foot care). She always had difficulty in school, and she was eventually diagnosed with a learning disability. Her test results showed that she falls within the average range in intelligence, visual memory, fine motor skills, and expressive and receptive language skills, with strengths in perceptual and organizational abilities. Her weaknesses include distractibility, short attention span, weak memory, poor auditory analytic skills, over-focusing, and slow processing.

Work has always been very important to Cappel, because it improves her self-esteem. She noted that people with learning disabilities usually have extreme strengths and weaknesses, but that the key to success is to learn to use the strengths to advantage and to find a career that fits. In high school, Cappel made best use of her strengths, interests, and skills to choose her jobs, which were related mostly to working with disabled children and teaching swimming and skiing.

Cappel spoke of the difficulties she experienced in primary school and high school. Many of her experiences undermined her confidence and made her feel isolated. However, they also motivated her to work harder and to prove to everyone that she could succeed. She sought help from many tutors to assist with reading and comprehension. She also learned that repetition, frequent breaks, and being quizzed by friends were the most successful ways for her to study. Most importantly, she learned how to ask for help.

After Cappel had been in university for two weeks, both she and her parents saw that the academic environment was not a good fit. She transferred into a prosthetics and orthotics (O&P) technical program that was hands-on and visual and whose small class size and exceptional individual support matched her strengths. After working for a year in O&P, she learned about chiropody, a profession that would lead to a great hands-on future and the ability to help people. Moreover, Cappel’s background in O&P, with her knowledge of anatomy and biomechanics, would be great assets.

Chiropody is a good choice for students with learning disabilities who have strong interpersonal, verbal, and hands-on abilities, said Cappel. Jobs in hospitals and private clinics are available, and the option of running an independent business is also a possibility.

Now in her final year of a chiropody program, Cappel is seriously considering opening a business, something that she believes will provide a strong sense of personal achievement and independence. She is currently working as an intern and is developing practical, hands-on skills.

Cappel shared some ideas on job search strategies for people with a learning disability. You must work harder to get where you want to go, she said, but you also have the advantage of knowing your strengths and weaknesses. Persistence is very important. When applying for a job, it is vital to emphasize your strengths, your ability to work hard, and your passion for what you are doing.

Cappel advised students to avoid thinking that something that starts out tough will not be rewarding in the end. However, “make sure it is something that you enjoy.”

In closing, Cappel noted, “I have been shot down in the past and will probably be shot down in the future, but most important is that I have to continue to pursue my dreams to get where I want to go.”

Career Plans with Purpose: “Love What You Do”

Julie Ouellette, Disabilities Counsellor, Carleton University

Julie Ouellette spoke about making career plans with an emphasis on self-knowledge. The first step is self-exploration, she said. “What matters most is how you see yourself.”

The focus should be on knowing oneself rather than on the challenges. Inventory your values, interests, personality, and skills, she said, listing some sample prompt questions: “What am I good at?” “What am I curious about?” “What do I struggle with?” “What is my family context and how does that inform my career choices?”

Ouellette then introduced some standard psychometric tests that can help with self-exploration for the purpose of career planning and development. The Personality Dimensions, the Myers Briggs Personality Type Indicator, the Nightmare–Fantasy Continuum, and the Values Inventory are all useful for this exploration.

Ouellette also recommended using a variety of approaches and not relying on just one tool. She further suggested making use of search engines on the Internet. For example, by searching with phrases such as “teaching children in Honduras” or “working with animals in France,” people can use Google to find many sources of ideas and information.

Among Ouellette’s favourite Web sites are www.personalitypathways.com, which is based on the Myers–Briggs theory, and www.youthpath.ca, a government Web site that lists career profiles and related government positions.

Another important resource is the National Occupation Classification 2001 web site. It can be reached by typing “NOC” and “2001” into the Google search box. Ouellette encouraged those who are interested in a more than one profession to use that site to uncover more information. For example, for people interested in teaching, the site will list all related options and professions. The main duties and employment requirements of various professions are also clearly indicated. Based on this information, job seekers can determine the accommodations that might be required.

Other self-knowledge that Ouellette suggested students with disabilities cultivate includes the answers to these questions:

• Can you articulate your disability in three or four sentences?
• Do you understand the assessment of your disability?
• Is your learning style hands on? Visual? Auditory?
• What accommodations are you using now? What will transfer to post-secondary education? To the workplace?
• Disclosure beyond school: When to disclose? To whom?

Key challenges for students with disabilities include maintaining motivation; accepting career decision-making as an ongoing, lifelong process; making connections between academic subjects and career goals; comprehending changes in the labour market; and overcoming indifference because of lack of preparation or a feeling of being overwhelmed. Ouellette noted that looking for a job is overwhelming for everyone, but that educational organization and planning from the start will help.

Ouellette then listed the top qualities that employers typically look for:

• Communication skills
• Motivation/initiative
• Teamwork skills
• Leadership skills
• Academic achievement (including any training, formal or informal)
• Interpersonal skills
• Flexibility/adaptability
• Technical skills
• Honesty/integrity
• Work ethic
• Analytical/problem-solving skills

And she recommended a number of Web resources:

• WORKink (www.workink.com)
• MonsterTRAK (www.monstertrak.ca)
• Paths to Equal Opportunity (www.equalopportunity.on.ca)
• Canadian Careers (www.canadiancareers.com/disability.html)
• Ontario Disability Support Program (ODSP): www.cfcs.gov.on.ca/CFCS/en/programs/IES/OntarioDisabilitySupportProgram/default.htm)
• Human Resources and Skills Development Canada (HRSDC): www.sdc.gc.ca/en/gateways/individuals/audiences/pd.shtml)
• Job Seeking Skills for People with Disabilities: A Guide to Success (www.csun.edu/%7Esp20558/dis/sh.html)
• Persons with Disabilities Online (PWD-Online): www.pwd-online.ca/pwdhome.jsp?lang=en)
• Office of Disability Issues (ODI): www.hrsdc.gc.ca/en/gateways/nav/top_nav/program/odi.shtml)

In closing, Ouellette remarked that “you’re hired for what you can do, not what you can’t do.” She encouraged the students to find a position where they can and want to do their best, and she expressed hope that they will be able to do what they actually love.

Questions and Discussion

A delegate with a learning disability said that his biggest hurdle is that he is not visual. McDonnell noted that a learning disability does not reflect on ability or intelligence, and that many wonderful employees have learning disabilities. To level the playing field, Marsaw advised students to ensure that their needs are known by the time of the interview.

A participant asked whether a job’s workload can be adjusted according to a person’s disability. Ouellette suggested that, before applying for a position, a potential applicant should find out whether such adjustments are possible within the particular setting. McDonnell added that certain jobs have productivity measurements, such as the number of files or customers processed daily. He invited the questioner to explore the possibility of job shadowing to find out if her personal level of comfort can be met. He also suggested that, if she is working with a community partner in her job search, she ask for an assessment of available shortcuts and tools that could be provided to help with the essentials of the job. Marsaw suggested follow-up assessments of personal accommodation needs every few years. New technologies or ideas for improving productivity always come along.

A participant asked about whether an obligation exists to inform an employer about a disability during the application process. McDonnell said that no legal obligation to disclose exists, but that he recommends that interviewees inform the employer about their accommodation needs. Willans-Théberge commented that disclosure is a highly personal issue and may depend on both the disability and the job. For her, as a lawyer, it was important to self-identify. However, the situation may be different for another kind of job. McDonnell added that, if the disability may require medical attention—epilepsy, for example—there is value in letting the manager and the occupational health and safety office know. Disclosure would ensure that the employee’s dignity, choices, and safety are respected and protected.

A participant with a background in social work said that jobs requiring driving to make home visits would exclude him. He asked how he should make an accommodation request. McDonnell suggested that he ask for transportation that would allow him to make visits. Video conferencing is another option. Dillon added that some centres arrange for clients to come to the social worker. McDonnell commented that most job advertisements portray a “fantasy” person and that most companies are willing to negotiate. He advised participants to develop their negotiation skills.

Another participant asked the speakers to comment on changes in workplace culture. Marsaw said that he is very open to coworkers about his accommodation needs, including showing them his office and equipment and asking for formats that are better for him. It is important that employees with disabilities themselves help to increase awareness, he said. Willans-Théberge said that NCFED recognizes that corporate culture is a major barrier. The challenge lies with line managers and others responsible for recruitment and career progression who have difficulty understanding accommodation needs. NCFED is continuing to raise awareness. McDonnell remarked that, with the looming labour shortage, gaps in the talent pool, and interest in corporate social responsibility, the culture is changing. The topics of the day are inclusion and diversity, and companies are no longer prepared to tolerate intolerance.

A participant with schizophrenia said that, in many everyday places, he feels much less comfortable than at the conference. He asked what can be done in the larger society to help remove stigma against mental illness. McDonnell said that the Canadian Association for Mental Health has started a roundtable to deal with this stigma and to educate company CEOs on mental health. He suggested that the questioner partner with an agency that could help with his job search, especially with respect to asking for accommodation. People with mental illness typically require accommodations such as greater flexibility in work hours and no change in shift work.

A participant asked what is being done to educate teachers and professors about students with disabilities. Ouellette said that her office uses every opportunity to raise awareness of its services with the university administration and with students and faculty members. McDonnell noted that a process called universal instructional design (UID) is being developed at the University of Guelph. The UID process considers the potential needs of all learners, including those with disabilities, and it can be applied to everything from campus layout to course design and delivery.

Another participant asked for advice for people who, like him, have a voice that is affected by their disability. He noted that he has repeatedly experienced discrimination when employers call in reply to his job applications. McDonnell suggested that, on his applications, the questioner specify that he cannot work on the telephone and that he add a request to be interviewed in person. Another possibility is to request the use of a computer chat room, allowing him to have an operator answer for him. McDonnell emphasized that this type of disability does not reflect on intelligence, and he encouraged the participant to seek accommodation.

A participant asked about the appropriate time to ask for workplace accommodation. McDonnell said that the request should be made throughout the application process and throughout a person’s career, because technological change is continual: equipment is updated, and new kinds of accommodations are developed. Moreover, disability changes with age.

The same participant then asked about specific screening for scheduling and peripheral issues that provincial government human resources programs undertake. McDonnell reiterated that there is no obligation to disclose, but that asking for accommodation and making people aware of the situation so that they can provide support is appropriate.

A participant asked the presenters to comment on experiences with creating a new position or combining several existing positions for a person with disability. McDonnell cautioned that this approach can put a disabled person into a “job ghetto.” He recommended taking on existing roles, but requesting accommodation. Marsaw suggested that networking is one of the strategies for self-marketing and building toward starting one’s own business.

Another participant responded that she sees a growing push toward self-employment, and yet not everyone is entrepreneurial. She also raised a concern that people with disabilities qualify for self-employment training programs sponsored by the federal government, and yet they receive no financial support for the duration. McDonnell said the Ontario Disability Support Program (ODSP) is beginning to understand the challenges involved in going to work after being in school for some time. One solution is to maintain benefits while people establish themselves in the workforce or in their own businesses. In general, the ODSP is becoming more receptive about disability support and more prepared to negotiate on an individual basis.

Looking into the Future of Post-Secondary Education

A Course for Post-secondary Students with LD/ADHD

Diana Cassie, Learning Disabilities Counsellor and Psychologist, Dalhousie University Counselling Centre

Diana Cassie discussed an experimental course that she had designed and that is currently in development. The university and college experience is riddled with new challenges for everyone, she noted. The transition for students with learning disabilities or ADHD or both can be more complex because of these additional challenges:

• Pace of learning
• Self-directed nature of the learning
• Nature of the instruction (focus on verbal communication and reading)
• Type of learning resources used (learning resources at post-secondary resource centres are often different from those available in high school)
• Demand for self-advocacy (often, new students do not have the skills to self-advocate effectively)
• Social challenges (for example, the extra time required to complete tasks can contribute to social isolation)

Cassie discussed the importance of responsiveness to the needs of students with learning disabilities or ADHD, citing studies that show evidence of the benefits of course intervention. She then outlined selected elements of the experimental course that she is designing for students with learning disabilities or ADHD.

Cassie uses the acronym ICPOGMUER to refer to all elements of a meta-strategy for navigating the complexities of the curriculum development process. Each element represents a step in the process, and yet the steps can be followed in varying orders and can be repeated as needed.

The elements of the ICPOGMUER meta-strategy are these:

• Image

  Design must start with a clear understanding of the intended learner. In developing a curriculum or program, students with learning disabilities or ADHD and those who work with them should be consulted. Available theories and research can provide additional information. The end result is a list of potential learning outcomes. This list will always be much longer than can ultimately be included in any course of study.

• Category system

  The possible learning outcomes are analyzed and classified. One classification system divides outcomes into three categories: knowledge, skills, and affect.

• Priorities

  Learning outcomes are prioritized. Learning outcomes that are of secondary and tertiary importance based on factors such as time and resources available, the skills and training of the instructor, and the potential for similar learning outcomes in other courses, are eliminated.

• Organizers

  Learning outcomes are analyzed to see if “content organizers” that could link the outcomes to enhance clarity and facilitate instruction are present. One approach is to organize the information into three learning contexts: learning pertinent to self, learning pertinent to interpersonal situations, and learning pertinent to the world at large (also called SOS—“self, others, and situations”). The SOS system of organization also helps in organizing learning outcomes by “level of knowledge” (from simple to complex—“know about, know how to, and be able to”).

• Growth

  The program designers consider the intended learners: where they are and where they could be after the instructional facilitation. They then set targets for growth.

• Methodology

  The methodology is chosen. Creative and motivational instructional methods are selected to facilitate learner movement from lower to higher levels of growth. For example, instructors might want to employ assistive technologies, e-mentoring and e-coaching, or specialized tutoring to aid learning.

• Units

  Instructional units can be as basic as an instructional sequence, and as complex as a course of study. The basic unit in university tends to be a “lecture.”

• Evaluation

  Evaluation tools are identified that can be used to facilitate the learners’ performance, the educator’s instruction, and the management of the course.

• Resources

  Relevant instructional resources are identified, described, and found. One tool is personal history documentation software, which allows students to identify and organize their career-relevant attributes—for example, formal education, values, hobbies, and so on.

During the ensuing discussion, one participant asked how students with learning disabilities would be included in the theoretic and abstract process described. Cassie said that the course was still in the development stage and that she hoped to hold some focus groups. She added that she hoped eventually to offer the course for credit. Asked if the course could be offered online, she said she envisioned it taking place in a more traditional classroom setting with extensive interpersonal contact.

Alleviating the Stress of Presentations Through the Use of Technology

Krystine Donato and Lianne Fisher, Graduate Students, Brock University

Krystine Donato presented a strategy for alleviating the stress of presentations through the use of technology. She noted that oral defense presentations can be a barrier for some students with disabilities. A disability such as cerebral palsy can affect speech production; a speech production disability can increase stress and fatigue in oral presentations; and stress and fatigue can adversely affect oral presentations. As a form of accommodation, Donato broke her defense into two sections: the proposal presentation used video, and the question-and-answer session took place live.

Recording an oral presentation maximizes clarity, because it can be taped in multiple sessions and can include closed captioning. With the presentation pre-recorded, the presenter can focus on interacting with the audience. Energy is preserved for answering questions.

Lianne Fisher, who acted as Donato’s research assistant and who provided accommodation support, described the technological support used to record the presentation. She explained that Brock University has a “Smart Room” equipped with options for displaying recorded material and PowerPoint presentations; for conferencing, camera recording, and editing to incorporate closed captioning; and for handling wireless communication.

In the Smart Room, Donato was filmed as she spoke from PowerPoint slides displayed on a screen in front of her. Fisher sat in the front of the room to represent the audience. When the committee viewed the video of the oral presentation, Donato was present live to show the PowerPoint presentation for the committee alongside the video screen. The process went very smoothly.

Donato commented that people who knew her well found that she was relaxed in the DVD recording. She noted that she was much less stressed than she would have been giving the presentation live, because only the technician and Fisher were present rather than the whole committee. She added that she wanted the committee to be able to focus on the content and to understand it, rather than be distracted by her speech. Recording the oral presentation portion achieved this goal.

Donato read a quotation from her co-presenter, Fisher, stating that “accommodation is not about doing it ‘my’ way or ‘your’ way, or [about] equity per se—it is about people having sufficient liberty to demonstrate what they know and to be who they are.”

Donato concluded with several after-thoughts and recommendations:

• Cost is an obvious consideration. In her case, technical services were provided for free, because the technicians saw this as an opportunity to test a new form of technological accommodation. However, if the student is responsible for the cost, the bursary for students with disabilities would cover it.
• More time for making the recording would be preferable so that the task could occur in smaller chunks, with breaks—perhaps over more than one day.
• A balance between independence and technology support is required. In this case, all the technology was user-friendly, and Donato and Fisher were very well oriented in its use by the technician.

Next time, said Donato, they plan to break the recording session into two or more sessions and to use closed captioning. During the discussion, Donato also commented that the recording method could also be helpful for others, such as people with learning disabilities or cognition disabilities.

One delegate suggested that a pre-recorded presentation could take away from the experience for the listener. Donato replied that the approach is an accommodation for presenter and audience alike, because it enhances the clarity of the presentation. “If my committee can’t [understand] what I’m saying,” she asked, “how are they going to grade me?”

College and University Students with Disabilities Speak Out on Their eLearning Experiences

Jennison Asuncion, Co-director, Adaptech Research Network
Catherine Fichten, Co-director, Adaptech Research Network; Professor, Dawson College and McGill University
Joan Wolforth, Director, Office for Students with Disabilities, McGill University

Jennison Asuncion presented some background information on an eLearning study that was part of a larger investigation conducted by the Disability and Information Technologies (Dis-IT) Research Alliance.

Several partner organizations were involved, including Adaptech, NEADS, and the Canadian Association of Disability Service Providers in Post-Secondary Education. The research team included students (including students with disabilities), disability service providers, disability activists, professors, and eLearning specialists (managers of distance education departments, for example).

Elearning is the full range of information and communications technologies that professors use when teaching their courses. Included are technologies used in the classroom, those used for online courses, and the ones used for hybrid courses (involving classroom and online components).

For this particular study, “accessibility” was defined as “the ability of a learner, regardless of their disability, to easily and independently use e-learning.” For some learners, adaptive technology may be required to interact with eLearning.

Asuncion presented some sample research questions:

• How accessible are different types of eLearning to students with disabilities?
• What accommodations are currently being made for students with disabilities?
• Are there differences between English- and French-speaking institutions?
• What are the barriers?
• What are good solutions?

Before constructing the survey, the researchers undertook a series of 22 interviews with five groups of key informants: students with disabilities, campus-based service providers, faculty, eLearning specialists, and post-secondary e-publishers. They used the resulting data to construct a survey, which they delivered online to four of the five groups (e-publishers were not surveyed).

Participants from colleges and universities numbered 406, with representation from all ten provinces and the Northwest Territories: 245 students (205 with disabilities), 77 disability service providers, 45 eLearning specialists, and 39 professors.

Catherine Fichten then provided additional information on the survey demographics and presented some of the findings. The “top five” types of disabilities represented among the student respondents were

• learning disabilities (42%),
• mobility impairments (23%),
• ADD or ADHD (20%),
• psychological or psychiatric disabilities (16%), and
• health and medical impairments (15%).

Fichten noted that still-lower percentages of respondents had vision or hearing disabilities or difficulty using their hands or arms. Those groups were therefore not as well represented. Many students (44%) had more than one impairment. That latter finding suggests the need for universal instructional design. It is not practical to target “an impairment,” said Fichten. “We have to target students.” She then listed the five most accessible types of eLearning according to the survey response:

• E-mail
• Course-related files in Word, PowerPoint, and similar software programs
• WebCT, BlackBoard, FirstClass (although sometimes these programs are used for content that is not accessible)
• Course web pages
• In-class presentations using PowerPoint

Fichten noted that the results reflect the nature of the sample—most of the students surveyed had learning impairments as opposed to visual and hearing impairments.

The survey also indicated the five most inaccessible types of eLearning:

• Videoconferencing
• Live, online, voice-based chat (speaking and listening)
• Audio clips and files (e.g., recorded audio-only class lectures)
• Online content that uses Flash
• CD-ROM tutorials used in class or computer labs (publishers have not been making most of their products accessible)

The researchers also asked general questions about accessibility of the eLearning provided by schools, with students asked to rate their level of agreement with statements on a six-point scale. The results suggested that, on average, accessibility is reasonable and eLearning has not posed difficulties.

Respondents identified the top five benefits of using eLearning:

• Availability of online course notes
• Help in learning and academic success
• Help in understanding course lecture content
• Ability to work at own pace
• Ability to work or learn from home

The top five problems encountered in eLearning were these:

• Inaccessibility of web sites and course management systems
• Technical difficulties (including hardware and software problems)
• Poor use of eLearning by professors
• Difficulty connecting to course management systems on the web site
• Lack of knowledge of how to use eLearning

Respondents also noted the top five solutions to eLearning problems:

• Not resolved (67%)
• Resolved using a non–eLearning solution (20%)
• Professor provided assistance (12%)
• Technology or software was obtained and used (10%)
• Alternative formats were obtained (9%)

The fact that most problems with eLearning remained unresolved is a significant concern, as was the finding that the second most popular solution to e-learning problems was a non–eLearning solution.

Joan Wolforth commented that service providers are aware that many problems remain, despite the somewhat positive results seen in the survey. She suggested that much of the response was disability-dependent. People with different impairments (those with visual impairments, for example) would likely have given different responses. Wolforth noted that the web page at McGill University is technically accessible, but still requires much work to navigate with a program such as JAWS. Accessibility also depends on the level of skill that students have with a technology. Often, students do not receive the training that they need. Another issue is cost.

Wolforth indicated that this comprehensive research project will help in communicating with university administrations, because it shows that accessible eLearning has advantages, but also problems that need to be addressed. The study has informed service providers and students of what is available, what works, and what is needed.

Wolforth then summarized the conclusions, stating that eLearning has many benefits for students and that many popular forms of eLearning are accessible. The caveat is that the experience of eLearning varies depending on the disability.

But the issue goes beyond eLearning: a whole e-university exists. Students can do everything online, from completing their application to watching graduation ceremonies. Print formats are less and less available, which affects navigation through university. For many students, barriers still exist, and for some, technology produces additional barriers. For example, one professor put moving graphics into a PowerPoint presentation, making it inaccessible to a student with low vision. The professor did not understand when the student complained that the presentation was inaccessible.

The next steps in the study are to complete the analysis of the data, to disseminate findings, and to make recommendations. More information can be found on the Adaptech website: www.Adaptech.org.

During the post-presentation discussion, one participant suggested creating a national forum where people could post their problems and share solutions. Asuncion commented that NEADS has an eMail discussion list and that the Adaptech Research Network is exploring options.

The group discussed how to motivate professors to share their material in e-format. Wolforth and Fichten recommended that students explain to their professors why they need the material. They also commented that, if a professor is protective of copyright, a student may still be able to obtain the material by signing a confidentiality agreement.

One participant asked for advice on where to start when making a student portal more accessible. Wolforth commented that the best approach is to consider accessibility from the very beginning. Asuncion added that automated validation and repair tools on the market such as AcVerify, can help web designers who may not know that much about accessibility determine the accessibility of an existing site.

Asked if the eLearning research had involved professors with disabilities, Fichten said that identifying faculty with disabilities is challenging. Only about 30% of disability service providers provide services to faculty. Noting that no association exists for faculty with disabilities, she suggested that NEADS could start a subcommittee on this topic, adding that there would be NEADS members who would eventually become university faculty.

Another participant asked if the rise in eLearning had caused any problems with social isolation. Wolforth said that the university administration must understand that eLearning does not take the place of physical accessibility, and it can not be an excuse to avoid making campuses accessible. Also, eLearning has positive aspects that can reduce social isolation even for those who can not be physically present—chat rooms being one example.

Asked how a self-employed graduate could remain current regarding technology, Asuncion suggested a Google search for “newsletter assistive/adaptive technology,” which will find newsletters that provide up-to-date information on available technology. Organizations such as NEADS or consumer disability organizations also have information. Fichten suggested visiting the Canadian Association of Independent Living Centres website (www.cailc.ca or www.accva.ca). Industry Canada also has an Assistive Devices Industry Office (ADIO).

Asked how accommodation for students with disabilities is funded, Wolforth explained that several different processes are in place at her institution, from university-wide funding (through the student services fee), to specific initiatives such as library purchases and provincial grants for technology updates. She added that the Office of Students with Disabilities is normally consulted on decisions regarding technology accessibility.

How Accessible Are Computer Technologies on Your Campus?

Jennison Asuncion, Co-director, Adaptech Research Network
Catherine Fichten, Co-director, Adaptech Research Network; Professor, Dawson College and McGill University
Joan Wolforth, Director, Office for Students with Disabilities, McGill University

Jennison Asuncion explained that the Adaptech Research Network is collaborating with its partners, including NEADS, to develop a survey. This survey will give students with disabilities an opportunity to let their colleges and universities know how available and accessible computer technologies are to them. This applied research project is funded by the Canadian Council on Learning.

As part of the development of the survey, Adaptech is asking conference delegates to participate in mini-focus groups at their tables. Asuncion explained that the current workshop session would involve a discussion to discover, from students with disabilities in particular, what their current experiences are when it comes to seeking out and using computer technologies at their colleges and universities. The discussion will help in the development of questions for the survey.

Asuncion also invited people to sign-up to become pilot subjects and to complete the survey online to ensure that it is accessible and easy to use.

During the session, students broke into small groups to respond to the following questions (submitting their responses on paper at the end of the session):

• What are some of the positive things being done to make computer technologies for students with disabilities available on and off campus (for example, convenient hours of access to computer technologies on campus, government funds for computer technologies for off-campus use)?
• What are some of the computer-related problems that students with disabilities experience on and off campus (for example, out-of-date software on campus, poor technical support for home computers)?
• If your institution has introduced a new technology such as online registration or electronic library services or resources, what benefits and challenges have students with disabilities experienced?

Banquet: Celebrating 20 Years of NEADS

Welcome

Kim Gerritsen, Jason Mitschele and Jennison Asuncion

Kim Gerritsen and Jason Mitschele welcome all attendees to the 20th Anniversary Banquet and acknowledged the NEADS board members, sponsors, and special alumni guests. Jennifer Finlay and Jason Mitschele, members of the outgoing board, then introduced a short video of the new NEADS logo, an open book that flies like a bird.

Jennison Asuncion acknowledged the board members who were leaving this year and offered special thanks to Zachariah Cameron, Chris Gaulin, and Michael Sanford for their efforts supporting NEADS’ IT requirements.

Keynote Address

Rick Byers, Managing Director, BMO Capital Markets

Corporate Canada is changing, said Rick Byers. Young people today want to work for a company that values diversity. The marketplace is also changing. Women, visible minorities, Aboriginal people, and people with disabilities have billions in spending power. Diversity as a cultural phenomenon is here to stay in North America.

Recognizing this positive development, the Diversity Council at BMO Capital Markets asked this question: “Does our firm truly reflect the communities in which we work?” The answer was “only partially.” The Diversity Council realized that BMO Capital Markets needed to address real barriers to employment in Canada for groups such as women, visible minorities, Aboriginal people, and people with disabilities. They found that barriers to education constituted a key barrier to employment. And so, in 2005, BMO Capital Markets launched Equity Through Education, a North America–wide charitable initiative designed to provide opportunities in education so that people could achieve their dreams.

Byers quoted from a letter designating May 17 as Equity Through Education Day. Annually, on that day, all profits from trading are donated to educational organizations dedicated to diversity. In addition to NEADS, other excellent organizations supported by this initiative are the Canadian Merit Scholarship Foundation (for women with leadership potential), the Foundation for the Advancement of Aboriginal Youth, Pathways to Education (for at-risk youth in high school), and several U.S. organizations.

NEADS, as a national cross-disability consumer organization run by and for students with disabilities, was the perfect choice to participate in the Equity Through Education program, said Byers. Its commitment to accessibility, equity, and inclusion reflects a vision shared by BMO Capital Markets.

Equity Through Education aims to improve access to the labour market for graduates and to help make continuous learning a reality, Byers concluded.

Alumni Speeches

Bruce Mesman, Technology Coordinator in British Columbia

Bruce Mesman reflected on his original reasons for attending his first NEADS conference in 1986 by saying “to be honest, it was to party.... I did not really realize what else I was going to experience at that conference.” In fact, he was to become a board member and the western representative for NEADS, and he would go on to play a role in many other professional and non-profit organizations.

Mesman recalled that, as a NEADS board member, he had significant influence on policy. NEADS has played a big role in the development of Canada’s legislation regarding the duty to accommodate, which in turn has helped to shape today’s services and programs for people with disabilities in the post-secondary environment. “My own selfish needs as a person with a disability were part of a much larger picture of universal access for most people,” he observed.

Furthermore, “NEADS was to give me leadership qualities, [such as] taking responsibility for my needs, and educating myself and others,” continued Mesman. NEADS also helped him acquire the virtues of courage and humility, gave him a platform to try new things, and provided a boost of security in the professional world.

“I was to become a role model,” said Mesman—adding that, as a person with a head injury, he believed that “the last thing I could do was take notes.” But he then became secretary of the board.

Reflecting on twenty years of NEADS and its impact, said Mesman, “means you [the audience] will leave this conference as leaders in your own right, as ambassadors to your own universities and colleges.” NEADS is there to initiate and influence change, he said. As ambassadors and leaders, “you’ll reshape what culture means today, for tomorrow.”

Steven Estey, Chair, International Committee, Council of Canadians with Disabilities (CCD), and North American Representative, World Council, Disabled Peoples’ International (DPI)

Steven Estey, a former president of the NEADS board of directors (1990–1992), remarked that NEADS is one of the most exciting disability organizations with which he has been involved, because “people here are all about leadership, excelling, and doing their best.” As participants in higher education, NEADS members have already met many challenges in life. “We have reason to be proud of ourselves as people with disabilities, because of what we have achieved,” he said.

Remarking that he had bumped into a colleague from Tanzania on his way to the conference, Estey reflected on what it means to be a leader in the disability community, first asking “What is the disability community?” In answer, he shared his views on the potential role for leaders in the community, and on changes taking place in the disability world. Although access to post-secondary education is important for students with disabilities, he said that they “should not lose sight of the fact that people with disabilities are 650 million human beings around the world”—400 million of whom live in situations of abject poverty. The World Health Organization estimates that only 2% to 3% of people with disabilities in Africa have access to any kind of education at all. When the disability community is understood in this broad context, it becomes clear that NEADS members are a group of people that can lead.

With the development of the new United Nations Convention on the human rights and dignity of people with disabilities, changes are underway concerning how disability is conceptualized. This shift is part of an evolution from the medical model of understanding disability to the social model, and now to an understanding of disability issues as human rights issues. As disability issues are reconceptualized as human rights issues, said Estey, “people with disabilities [are empowered] to reach out to other equity-seeking groups”—to build partnerships and coalitions for change.

The challenge for all NEADS members and alumni is to bear in mind the 650 million people with disabilities around the world. “[Given that] we have had the benefit of access to education, we have some responsibility to that group,” Estey concluded.

Stephanie Pollock, New Brunswick Department of Finance

Stephanie Pollock described the experience of being invited, in 1992, to her first disability conference, which led her to join NEADS and eventually to become board president in 1994. For the next two years, she traveled frequently while finishing her degree. “I had the opportunity to meet great people,” she said—adding that although she met government and university officials, “it was the everyday people I met who impressed me the most.”

Now that Pollock is in the work world, she says that she sees more of the discrimination and powerlessness that she was protected from as a child. To amplify that theme, she told the story of her first trip to Toronto for a NEADS meeting. She walked up Yonge Street after dark with a friend and later reassured her parents that she had been perfectly safe. “But I confess now, I left out one detail. [My friend] was completely blind!” She described herself walking down the street with crutches, alongside her friend with a white cane, and remarked, “It was like Moses parting the Red Sea!”

Although her work with NEADS is today a distant memory, said Pollock, she recently used Google to search for herself, and she found an article that she had written as NEADS president for a national magazine. But the lasting legacy of her time with NEADS is not “just the trips I went on and the reports we wrote,” she said. It is the fact that NEADS membership “boosts self-esteem when we need it.” Members of NEADS can not help but think of others and learn to care about others. NEADS members improve themselves, their leadership skills, and their self esteem, and they learn to dig deep for the strength they need so that “when the world kicks you, you come out swinging.”

Susan Vida, Communications Manager, CNIB

Susan Vida, a member of the NEADS board of directors from 1998 to 2002 (Quebec representative and vice-president internal), said that her early experience with NEADS came at a time when “life was difficult.” Until then, she had never met another person with a vision impairment. “I felt very alone.” But when she attended her first NEADS conference, she was fascinated by the synergy, sharing of information, and peer support, and she was most eager to contribute.

Vida recalled some of the “wonderful people” she had met while representing NEADS in Quebec and elsewhere, including on the Council of Canadians with Disabilities. She explained that she left NEADS in 2002 not because she was moving on with life, but because her father had been diagnosed with terminal cancer. He passed away in 2003.

Vida explained that, about 18 months ago, she had looked through her father’s personal belongings and had come across his university diploma. She saw his grades, saw that he was brilliant, and realized that the perfect way to commemorate his memory would be to contribute to NEADS financially. She thus announced that she was offering NEADS its very first bursary, the Janos K.Vida Bursary Fund, in memory of her father. The bursary will be owned and run by NEADS and all NEADS members will be eligible.

“It’s a perfect marriage,” said Vida. The bursary will acknowledge a deserving student every year based on academic excellence and contributions to disability rights, and will simultaneously commemorate her father. A newsletter with more details will follow, and an application form will be circulated in spring 2007.

Wrap-up

Jennison Asuncion added his voice to those that had fondly recalled their time with NEADS, commenting that “it has been a privilege” to have worked with NEADS during the last 12 years.

Jason Mitschele then offered a formal thank-you to National Coordinator Frank Smith, calling him the “founding dad” of NEADS. He presented Smith with a watch, complete with an inscription expressing gratitude for all that Smith had done for NEADS.

Smith expressed his gratitude, remarking that he was proud of all who had contributed to the past 20 years. “I have the greatest job in the world,” he said—adding that he looked forward to continuing for a long time with the great advocacy work done by NEADS on behalf of post-secondary students and graduates with disabilities.

NEADS General Membership Meeting

Report on Activities 2004–2006

Open Representative and Secretary/Treasurer Mahadeo Sukhai reported on behalf of NEADS President Rachael Ross, commencing by noting that the 2004–2006 period brought NEADS to its 20th anniversary year.

During 2004–2006, NEADS completed two major projects and launched three new ones. In spring 2005, NEADS published project reports on Making Extra-curricular Activities Inclusive: An Accessibility Guide for Campus Programmers and Access to Academic Materials for Post-Secondary Students with Print Disabilities. Both are available on the NEADS web site and from the NEADS National Office.

The three new initiatives are the Job Search Strategies (JSS) forums project, the Equity Through Education Phase II project, and the MuchMoreMusic Accessibility Scholarship. The first two projects are both funded by the Equity Through Education program operated by BMO Capital Markets. The JSS project is a series of job search strategies forums across Canada, similar to the workshop held earlier at the current conference. Equity Through Education Phase II is developing a scholarship/mentorship program that will be the first of its kind in Canada. The MuchMoreMusic scholarship is awarded to a disabled student who is pursing a career in broadcasting and is a partnership with CHUM Television and MuchMoreMusic.

The NEADS Online Work System (NOWS) www.nows.ca continues to grow. As of October 2006, it had registered 71 employers and more than 1200 students and recent graduates. NOWS is promoted to students, graduates, and employers through strategic advertisements and information events.

The NEADS web site (www.neads.ca) logged more than 62,000 unique visitors in 2005. Among the most commonly visited pages are the financial aid directory, the NEADS newsletter, and the job site. The NEADS-L e-mail list has approximately 200 users.

A new executive was elected to the NEADS board in June 2005. The board and executive have met regularly in person and by teleconference over the past two years.

Mahadeo noted that NEADS has retained strong ties with many organizations and advisory groups across Canada, including the Council of Canadians With Disabilities (CCD) and the Quebec Association of Post-Secondary Disabled Students (AQEIPS). NEADS and CCD are both participating in the work of the UN Convention on Disability Rights.

The board’s key issues are to improve communications, self-sufficiency, and long-term visioning and planning.

Report on Voting Delegates for 2006–2008 Elections

Meeting chair Jennifer Finlay (Nova Scotia representative and vice-president internal) noted that voting delegates could cast their ballots today between 9 a.m. and 12:30 p.m. to elect a new board of directors to serve the association for the next two years.

Financial Report

Sukhai presented the organization’s financial report for fiscal years 2004–2005 and 2005–2006. Copies of the audited financial statements, as prepared by McCay, Duff and Company were made available in the general meeting to participants. Each fiscal year runs from April 1 to March 31.

Fiscal 2004–2005 incorporated the Inclusion and Access to Academic Materials projects and the 2004 National Conference. Total revenue was $320,564. Expenditures totalled $322,000.

Fiscal 2005–2006 incorporated the beginning of the JSS project and four JSS forums. Total revenue was $251,051. Expenditures totalled $228,268.

Sukhai explained that the year-to-year differences in revenue and expenditure were attributable to variations in project costs. In particular, one project was operational in 2005–2006 as compared with two in 2004–2005. The 2005–2006 net positive balance will carry over into fiscal 2006–2007, as will some JSS costs that arrived too late to be included as part of fiscal 2005–2006. Income from Equity Through Education Phase II will be reported in fiscal years 2006–2007 and 2007–2008, as will income from the JSS project’s second year.

Report on JSS Forums Project

Jason Mitschele, Ontario representative, vice-president external, and chair of the JSS Project Planning Committee, noted that, with support from the BMO Capital Markets’ Equity Through Education Program, NEADS had already held six JSS forums across Canada in Toronto, Edmonton, Victoria, Montreal, Halifax, and Ottawa. The next two forums will be held in 2007 in Winnipeg and St. John’s.

The forums have received excellent feedback from participants. All forum reports are available on the NEADS web site and include summaries of the presentations and discussions. Feedback from the post-forum online survey has also been very helpful.

Mitschele is the project manager, and Jennifer Dillon was hired in summer 2005 as the project consultant.

Presentation of Equity Through Education Phase II Project: National Scholarship and Mentorship Programs

Mitschele spoke about the Equity Through Education Phase II Project. Phase II includes two types of bursaries offered through BMO Capital Markets. Up to four individual NEADS Equity Through Education Scholarships will be awarded per year to encourage full access to post-secondary education for students with disabilities. The amount of each scholarship will be $3,000. These students often have greater barriers to participation in higher education. They also often face extra costs because of their disabilities.

The project will also offer an annual NEADS Equity Through Education Organizational Project Award. This award, in the amount of up $5,000, will be granted either to a post-secondary campus group of students with disabilities or to an access committee that addresses disability issues at a university or college. The award is intended to support innovative programs and initiatives to improve campus life for students with disabilities.

In addition, the project is developing the framework for a National Mentorship Program to help students with disabilities make a more successful transition into the employment market. Julia Munk is the coordinator/consultant.

Finally, NEADS is continuing to develop and raise awareness of the NOWS – the NEADS job site. The NEADS web team is attending various human resources conferences to better prepare to make improvements to the web site. NEADS is also conducting outreach with students, recent graduates, and employers by organizing information events and by participating in relevant conferences across Canada.

Other Business

Sukai thanked retiring Board members Jennifer Finlay, Kim Gerritsen, Kristen McLeod, Jason Mitschele, Rachel Ross, and Jill LaPlante for their service to the organization.

Creating Leaders for the Future

The Access Game: Creating a Dynamic Advocacy Group on Your Campus

Rose Mariana Robb, student, University of Victoria

Rose Mariana Robb told the audience that an effective advocacy group will likely encounter various political challenges during its start-up and building phases. Fundraising and alliance building are two key challenges. Another is the prevention of resistance and backlash once the group succeeds in obtaining funding.

To demonstrate some typical scenarios and to facilitate finding possible solutions, Robb led the delegates in a series of interactive “forum theatre” exercises. She explained that this type of theatre was originally called “theatre of the oppressed.” Now called “applied theatre” or “theatre for social change,” it is an exercise often used in social justice movements to help participants work out social problems in their community. Actors first demonstrate the problem in a short scene, with no resolution. The scene is then repeated, and this time audience members are encouraged to jump in at any time to take on a role if they have an idea about how to resolve the crisis or change the outcome of the scene.

As Robb rehearsed with the first group of actors outside the room, Julia Munk gave the next presentation.

Autonomy and the Struggle for Social Change

Julia Munk, Coordinator, University of Toronto Access Centre

Munk spoke about her experience advocating for disabled students at the University of Toronto. In 2002, Munk and Mahadeo Sukhai started Students for Barrier-Free Access, an association of students with disabilities and their allies. Sukhai and Munk later decided that they wanted a more autonomous voice and the ability to work in the way that other equity-seeking, rights-based organizations worked—shifting from a focus on individual rights to more of an advisory role.

The group began with just three active members, Munk said—adding that most campuses require only two official members to start a group. At first, there was a great deal of public rhetoric in support of students with disabilities. However, once the group was successful at obtaining funding and became more embedded among mainstream student priorities, the situation became more complicated. Munk emphasized that a group cannot work in a vacuum; it must understand not just the common challenges of start-up but also the political context within which it is operating.

A common issue across campuses is how to effect change with just two, three, or five people. A group that small must be as loud as possible to achieve its goals. Another issue is deciding whether to start a new group or to infiltrate other student groups. The next focus is sustainability, which involves obtaining funding. Generally, the group will campaign for a referendum on a levy for its activities, with the funds coming from either the university or the student society. After acquiring initial funding, the group must build its membership. However, a number of political barriers typically surface at that stage.

One of the barriers is the use of Robert’s Rules of Order, a parliamentary process that is typically used by student societies for conducting meetings. The rules can help bring order to meetings, but when used to deal with large issues and groups, they have a tendency to shut out minority voices and exclude those who do not know the rules.

Munk explained that “Call to Question,” a term commonly used in Robert’s Rules of Order, means to stop the current debate and proceed immediately to a vote. The first “forum theatre” production would focus on some of the issues surrounding Robert’s Rules, Munk said.

Forum Theatre: “Majority Rules”

Robb described the setting of the first scene, called “Majority Rules.” The play takes place in a boardroom at a student society board meeting. A disabled students’ group has been successful at raising annual funding of more than $50,000 through a referendum question on a student ballot. It has also been able to acquire office space and has become a powerful group on campus. However, the funding is still administered through the student society, which is the typical scenario. At this meeting, the group is attempting to gain control of the funds that it has raised.

The play begins with the student society chair asking for a motion with regard to launching finances for the disabled students’ group. The vice-president of finance raises the concern that, if the people making decisions about the use of the disabled students’ funds are actually students with disabilities, then a clear conflict of interest exists. The VP raises a motion to form a committee that will oversee the use of the funds and ensure accountability. Furthermore, to ensure judicious use of the funds, the VP stipulates that the committee must have no students with disabilities. When the constituency representative of the disabled students’ group objects, a board member interjects with “call to question.” Despite protests from the group representative, a vote is taken. The motion is carried by a majority vote in favour.

Robb said that this situation has occurred in many institutions where disabled students’ associations have obtained funding.

The scene was then repeated, with the audience invited to jump in and participate at any time.

One audience member argued that bias in the use of the funds would be appropriate, given that the funds were collected by and meant to be used for the students with disabilities. But a board member said that the issue is whether the group can use the funds judiciously.

Another audience member objected to the fact that some board members want to decide how an individual group uses its own money. That is not the board’s mandate, she said, and the group should be able to use its own money autonomously. A board member then pointed out that the money was given to the group by all students, and because the student society is accountable to all students, not only those with disabilities, all students should have a say in the use of the funds. That is the larger democratic picture, she said.

The vice-president of finance again asked for a vote, insisting that the majority should rule. The motion was amended to stipulate that, because the committee must not include students with disabilities, then neither must it include non-disabled students.

Forum Theatre: “The Lockout”

In the next scene, the student society locks the disabled students’ group out of their office, claiming that renovations have to be done. When the elected representative of the group objects, the student society chair threatens to call campus security. The disability service provider offers no support other than suggesting that the students consult the access committee or the space committee on campus.

An audience member remarked that, as a human rights group, the disabled students will take the issue to members of parliament and the federal government. Another audience member threatened to inform the university alumni association and the campus and local newspapers.

When one of the representatives of the disabled students’ group asked the disability service provider to advocate on behalf of the group, the service provider replied that advocacy is the role of the group itself; her role is merely to provide administrative support. An audience participant moved to start a sit-in, and the group representative further threatened to talk to all students and to other student groups at their institution and at other universities.

Another audience member warned that the reputation of the university was at stake. Accessibility is one of the factors in particular that had put the university in its “prized position,” she said, and denying accessibility would have a huge negative impact on that position among donors to the university, scholars that the university wishes to attract, and government and other organizations that provide funding.

In closing, Robb explained that, when a group begins to foster change and moves to focus on disability as a human rights issue, it must have a clear understanding of how to operate within its surrounding political environment. Fighting a legal battle is one option, but that option is a lengthy and costly one. Moreover, equity-seeking groups have many personal issues at stake. To operate in the mainstream, the group must work with other political groups on campus and must build alliances. Having a strong national organization such as NEADS is also helpful.

Changing the Paradigm: Changing Perceptions and Culture

Yolaine Ruel, Head of University of Ottawa Access Services

Yolaine Ruel spoke about leadership and becoming an agent of change. She began by noting that, although the United States has had an Americans with Disabilities Act for 16 years, proactive regulations that support accessibility do not necessarily lead to a change in culture and people’s perceptions. Ruel referred to a chart that showed that, in 2005, the unemployment rate for disabled persons ranged from about 50% to 80% in the United States. It is shocking to see these statistics in a society in which the movement for accessibility has existed for so many years, she observed.

Ruel then compared two models of change. The medical model sees the specialist as the expert on the disability, defines classes of disability by medical symptoms, promotes stigmatization, views disability as a problem or anomaly, and is transactional in nature. The socio-political model, on the other hand, sees the individual as the expert, acknowledges that disability exists in the social environment, fosters inclusion, views disability as a social construct, and is relational in nature.

With respect to accommodations, the medical model sees them as disposable, one-time, non-reusable modifications to the environment; the socio-political model sees them as sustainable and embedded into the system by design. For example, in the medical model, transcribing one Braille brook for one student takes 200 hours, and the transcript is used once and is often delivered late. On the socio-political side, publishers automatically provide accessible files to bookstores even before classes begin.

Institutions need to make a philosophical shift from disposable to sustainable accommodations, Ruel said. A movement towards universal instructional design is underway, and designing accommodations into the environment itself has begun. Creating sustainable accessibility means changing institutional culture, and this change requires leadership and the adoption of principles of change management.

Forum Theatre: “The Survey”

Robb introduced the next scene, “The Survey,” in which the elected representative of the disabled students’ group proposes to the board of the student society that they make the bylaws and constitution of the student society available in Braille.

The vice-president of finance responds by suggesting that the board send a survey to all disabled students on campus to determine if they all agree. The board sends out a survey without the knowledge of the disabled students’ group. The survey asks the disabled students to rank three items in order of importance: automatic washroom doors, infrared technology at lecture theatres, and the bylaws and constitution in Braille.

During the scene, the representative of the disabled students’ group protests that the survey is unacceptable. She was consulted, and furthermore, the questions attempted to separate disabled students into groups based on disability type. A board member argues that the survey is democratic because it involves all disabled students. The group representative points out that the student society, instead of addressing the original request, is asking for responses to university-wide issues that are outside its responsibility.

An audience member remarked that students with different disabilities have different needs. A survey cannot replace actual discussions with the various disabled populations. Moreover, many disabled students may not even know what is best for them, he said.

The representative of the disabled students’ group noted that the constitution and bylaws cannot be made available to some members and not to others. The cost of providing materials in Braille to members that require it is justified. Another representative said that accommodation is required by law and that the student society cannot bypass the group’s request.

The first representative added that the student society’s attempt to separate disabled students into groups is a denial of rights. The other representative emphasized that human rights trump all other legislation in Canada and must be honoured.

An audience member suggested finding allies for the group, because interpersonal relationships are just as necessary as the law is. Robb added that the law is only a compliance mechanism.

In the closing discussion, an audience member suggested designing a survey that asks students to specify accommodations currently used and desired accommodations. The relevance and practicality of that solution were acknowledged by the next participant, but that person also noted that allocation of funding was another issue to be addressed. If money is sufficient to implement only one initiative for one disability group, how should the student society choose among several disabled populations?

Forum Theatre: “The Takeover”

In this scene, the mainstream student society takes over the disabled students’ group once it succeeds in acquiring funding. The society accomplishes the takeover by sending a large number of non-disabled students to the group’s annual general meeting. These students claim invisible disabilities and therefore eligibility as members. They then cast ballots and vote themselves into executive positions in control of the disabled students’ group.

The setting is the office of the disability service provider. She is meeting with a student society representative and two executive members from the disabled students’ group, one of whom is a disabled student and the other, one of the newly elected non-disabled executive members.

The new executive had called a general meeting and the service provider had, on their behalf, sent a meeting notice through her e-mail list to all disabled students on campus. Despite protests from the disabled executive member that the election was bogus, the service provider maintains that interference in elections for student government officials is not the role of her office.

In the ensuing discussion, Robb emphasized that one critical element of surviving as a group and maintaining control is being diligent about the meaning of membership. Munk noted that this type of takeover actually occurred at the University of Toronto, where she studies. Subsequently, her student group defined the term “active membership” and required that anyone wishing to run for an elected position must be an “active member.” The criteria are attendance at a minimum of four meetings and two events in the 12 months preceding the election.

Robb commented that the primary factor—resistance—remains. Moreover, a takeover of this kind does not require mean-spirited people. There are people of goodwill who cannot see disabled students as being capable of controlling money in a responsible manner without oversight. The problem lies with stereotypes and impressions.

A participant from the University of Victoria said that such a takeover had occurred at her university too.

In closing, the group discussed incorporation as one way of establishing an autonomous organization. Participants also agreed that any equity-seeking group should have a strong constitution and bylaws and must anticipate backlash as it moves forward. Groups can help one another by sharing experiences.

Strategies to Promote Change: How to Become a Change Agent

Ryan Klomp, Coordinator of Learning Technologies, Access Services, University of Ottawa

Ryan Klomp said that, to bring themselves into the mainstream, advocacy groups must understand the culture of the bigger institution and work with the resistance that evolves as they try to effect change.

Klomp listed eight barriers to achieving systemic change:

• Ambiguous goals
• Ambiguous participation
• Lack of a link between behaviour and intention
• “Garbage can” decision-making
• Fragmentation
• Lack of collective learning
• Non-commitment
• Lack of systemic understanding at the macro level

What makes for a good change agent? Klomp says that it takes the right attitude, right knowledge, and right skills.

Right attitude means setting reasonable goals, working with university administrators, seeking enthusiastic and dedicated allies on campus and externally, and putting attitude above skill. Right knowledge means more than being able to manage projects. It means tapping into expert resources, actively creating networking and liaison opportunities, and setting concrete, realistic objectives for the duration in office. Right skills include interpersonal, negotiation, and arbitration skills. “People skills are the number one skill you need,” said Klomp. Also, “strong communication is critical to success.”

Klomp next presented a chart depicting the “colours model” of change management developed by Caluwé and Vermaak. Their five-colour change model is a holistic way of responding to varying needs in the community and incorporating a variety of approaches.

The “Yellow-Print” focuses on power- and interest-based relationships, including how to negotiate, form coalitions, and create win–win opportunities within formal and informal organizational structures.

The “Blue-Print” requires an understanding of project management methodology and recognition that change is a highly structured process that has clearly defined rules and that must be continually monitored. It is good for short-term projects such as hosting an event. Corporations favour this methodology, but it is unsuitable for advocacy groups.

The “Red-Print” is the colour of blood and passion. Its focus is human resource management—the “soft” aspect of an organization. It needs passionate, engaging spokespersons who are able to motivate people, to make change attractive, and to appeal to people’s desire for change and to work for a cause.

The “Green-Print” represents learning and growth through self-directed experience and creation of opportunities for interaction and feedback in the organization. One example is holding luncheons to share grassroots best practices on how to change an institution in an organic way. Learning can be motivated through dialogue and other tools that remove barriers, develop growth, and highlight possibilities for change.

The “White-Print” is the most interesting and controversial, because it deconstructs the idea of “controlled change.” It represents a self-regulated system that is in constant flux, with no control, but that naturally finds equilibrium. It challenges people on their beliefs, removes obstacles to change, and encourages people to be responsible for their own learning, evolution, and management of change.

Closing

A participant asked that, in future, the PowerPoint and other presentation materials be sent to attendees before the conference.

Moderators Mahadeo Sukhai and Lena Cook thanked the presenters and attendees for their participation.

New Developments in Disability Studies

Disability Studies: Changing the Landscape and Shaping Our Future

Nancy Hansen, Acting Director, Interdisciplinary Master’s Program in Disability Studies, University of Manitoba

What is the field of disability studies?

Not many years ago, disability would have been studied from a medical perspective, said Nancy Hansen. The field has come a long way in short period of time. Disability studies is still an emerging discipline, but it is changing the landscape of the academy from the ground up. The field is growing, and programs or elements have been established in colleges and universities nationwide. Disability arts and culture are found throughout Canada. But the most important aspect of disability studies is that people with disabilities are there. Their presence is changing established beliefs and practices on the front line. “We are making our way to the other side of the academic desk,” said Hansen. Still, barriers remain, she added.

In research on disability, a key question is “Whose knowledge counts?” Examinations of disability have largely taken place in the absence of people with disabilities, thus failing to take into account their own experience or knowledge base. The “strength in diversity” argument has been slower to take hold here than in other fields. Able-ist assumptions still affect mainstream research, although disability studies are beginning to change the landscape.

The involvement of people with disabilities has helped to move research away from objectification. But the question of whose knowledge counts—what knowledge is recognized as valid—remains a point of contention. The non-disabled majority still determine the terms and conditions of membership in the academy.

This situation is changing, but the move must go deeper than altered, politically correct language that is not always accurate. A fundamental shift is required if disability is to become an integral part of academic discourse. Accepted truths must be challenged with same vigor employed in other areas of study.

Innovative funding and knowledge-gathering processes must be developed, with people with disabilities in substantive roles at every stage. Key to this process is the recognition and acceptance that disability is a natural way of life.

Academics with disabilities are changing the way research is done, using methods such as participatory research. One anthropologist who uses a wheelchair does his field research over the Internet. This approach was met with resistance at first, but is changing now.

“Time and spatial organization gain enhanced significance when one’s movements and energy are distinct,” said Hansen. New ways are needed of dealing with the academic and physical environment. Often, academics with disabilities find themselves “at the centre of things” trying to look very professional. It can take a lot of effort to look smooth, because academics with disabilities must conform to a non-disabled environment. Yet their presence and input is changing research topics, funding, perspectives, and approaches in numerous fields.

Agencies such as the Canadian Centre on Disability Studies (CCDS) provide small grants for disability research. The CCDS works with the community and academia to change perceptions on disability.

People with disabilities do not create the broader constructs (political, economic, and social) of the world, but, in a more perceptual mode, “we do construct, imaginatively and discursively, the sense of our world.” This inner construction is what warrants access and understanding. The presence of academics with disabilities is reshaping perceptions. These scholars can be the conduit between the ivory tower and the disability community at large.

Hansen concluded with a warning: Many areas of study involving minority groups are becoming “sexy,” but easy domestication of these issues is worrisome. A danger exists of “tourism of the other” that avoids the deeper issues. But ultimately, Hansen said, disability studies and the participation of people with disabilities are promoting change.

During the ensuing discussion, Hansen was asked how people not involved directly in disability studies can become good conduits between disability studies and other fields. She responded that “you can take disability studies wherever you want to take it and bring it into your own discipline. Likewise, disability studies can engage with more traditional disciplines.”

Hansen was also asked how to negotiate the tensions between staying committed to the emancipatory research paradigm and staying true to the grassroots. She replied that “it’s all about dignity and respect, making inroads where you can.” She added that the key is to be persistent and professional, realizing that disability studies are a new way of thinking for many people and that change takes time.

Disability Studies, Huh? - Experiences in Higher Education as a Student in Disability Studies

Nathan Chan, PhD candidate, University of Illinois at Chicago

Nathan Chan presented his perspective on disability studies, beginning with some information about his own experience as a student with a disability. He noted that, even after discovering that his problems at school were rooted in learning disabilities and ADHD, he found it difficult to accept the accommodations that he was entitled to. In his traditional Chinese family, disability was equated with failure, shame, and problems. But, with the encouragement of guidance counselors and tutors, Chan was able to finish his degree.

A deep appreciation of diversity issues led Chan into disability studies. He noted, however, that disability was the hardest identity for him to accept on a personal level because of stigma and because his was an “invisible” identity.

To illustrate the diversity of perspectives on disability, Chan surveyed the audience for answers to the question “What is a disability?” Students and service providers gave a variety of responses. Chan noted that no universal consensus has emerged about what constitutes a disability. He reviewed the two predominant theoretical models analyzing disability: the medical model and the social model.

The medical model puts the “blame” on disability, viewing the person with a disability as a “problem” and suggesting that that person needs to adapt to the world. Disability is seen as the result of a physical condition, and the goal is to cure or manage the condition so that the person can have a “normal life.”

In the social model, the “blame” is shifted to society and the environment: people are disabled by socially constructed variables in the environment. For example, a person is not disabled because they cannot walk, but because they cannot enter a building.

Chan explained that, in one project, he surveyed people about their definitions of disability. Of the range of responses he received, the most interesting one, he said, suggested that a disability could be anything: “If you don’t have a pen in your class ... you’re disabled now, right?”

People with and without disabilities have narrow definitions of what counts as a disability. They typically associate the term with physical disabilities, said Chan. But using his understanding of the social model of disability, he explored several unconventional disabilities:

• HIV/AIDS
• A stutter
• Psychiatric disability
• Obesity
• Celiac disease

HIV/AIDS is still viewed as shameful and is associated with certain groups and behaviours. However, protection under law exists for people with everything from asymptomatic HIV to full-blown AIDS, and even for those simply perceived as having HIV/AIDS.

People who stutter are often typecast and fall into certain roles. Studies have found that these people have limited educational and employment opportunities.

People with psychiatric disabilities face barriers to service provision and low availability of services for independent living. The result is social isolation and a lack of financial resources.

In regard to people who are obese, Chan said that he was an investigator in a qualitative research study involving seven participants who had a body mass index above 30, to see whether they viewed their fatness as a disability. Many felt excluded from society, and they shied away from many activities. People who are fat face many barriers, including social barriers (such as being insulted by strangers) and physical ones (such as having to pay for two airplane seats on some airlines).

People with celiac disease also face disabling experiences. This autoimmune disease centers on an intolerance to gluten and requires a gluten-free diet. One important barrier is a lack of availability of gluten-free food. Another is the lack of understanding and awareness and the pressure to eat “normally” by friends and family.

All five conditions are unconventional disabilities. Some people in these groups do not consider themselves disabled, because disability is associated with shame, weakness, and stigma. Some do not feel that they belong to the disability community or “qualify” as being disabled. If they do associate with the community, they may be asked, “What is your disability? What are you doing here?”

Chan concluded that the field of disability studies “is not as rigid as you think.” It has been evolving over the last 30 years, expanding beyond conventional disabilities. People with unconventional disabilities also need to be sheltered under this common umbrella.

During the subsequent discussion, one participant asked how to conduct participatory action research in the most respectful way possible. Chan commented that one approach is to publish with the participants, who may even write parts of the publication. Chan and Hansen both emphasized the value of including the participants in every step of the project.

Reflections on the Sex(y) Disability Studies and the Inclusion of Disability in Sex-Positive Communities

Jennifer J. Paterson, Masters student, Critical Disability Studies, York University

Jennifer Paterson highlighted some literature on sexuality and disability, shared her concerns about how this work is progressing, and discussed her work on BDSM (bondage, discipline, sadism, and masochism) and kink in relation to disability and sexuality.

The social model of disability has looked at sexuality in terms of access, said Paterson. But if sexuality is a private matter, then the issues faced by people with disabilities are not addressed by the social model of disability. To be attentive to all the rights of people with disabilities, said Paterson, one must acknowledge that physical pleasure is a political issue and a public issue.

A range of provocative writing has emerged in area of sexuality and disability, but most of the material focuses on clinical issues. The concept of harm is also a common theme in the literature, because sexuality is seen as “dangerous” or risky for people considered unable to handle emotional and physical intimacy. By neglecting to speak of all realms of sexuality, the concept of pleasure is lost in the wealth of research focusing on harm and abuse prevention, said Paterson.

Some researchers make policy recommendations that people with disabilities should not be allowed to watch sexual movies featuring violence such as sadism. This reflects an authoritative caregiver perspective that reveals a sex-negative attitude and normative attitudes that deny the fact that sex goes beyond traditional notions of sexuality.

Some researchers present the voices of lesbian, gay, and bisexual people with disabilities. This work is important because much of the rest of the field has focused on heterosexual perspectives. “We must resist the temptation to ‘normalize’ sexuality,” said Paterson. Research should embrace all sexual identities, especially those not valued in Western society.

Discussing her research project, Paterson noted that even sex-positive discourses that celebrate sexuality in the queer community tend to ignore people with disabilities. To depart from heterosexual and clinical research norms and push the limits of studies of sex and disability, Paterson strategically chose BDSM or kink as the focal point of her masters research, to demonstrate how sexuality is a public and political issue and how it has been pathologized.

She first demystified BDSM or kink, which is typically conducted according to rules of consent and care. She explained that her research focused on the experiences of people with disabilities in the BDSM or kink communities. Her aim was to determine whether any dialogue existed to address the inclusion of people with disabilities in these communities, whether people with disabilities were included in the discussions, and the extent to which dominant social values such as “compulsory able-bodiedness” are replicated within the BDSM subculture community.

Paterson gathered data from several people with disabilities in a qualitative research project. Participants had varying degrees of experience within the BDSM community and a variety of disabilities. All related both positive and negative encounters in the community. The positive comments focused on the various notions of what is considered beautiful.

Other experiences varied. One participant suggested that age and duration of membership in the community contributed to the openness and welcoming of people with disabilities. Another believed that the attitude and acceptance of people at “play parties” depends on the community or group hosting the event, the type of venue, and the type of play.

One participant noted that it is harder to break into the community because people do not know how they will be perceived. Participants cited attitudinal and physical barriers in addition to economic barriers. (The cost of events is high.)

It seems that the participation of people with disabilities is conditional on their proving themselves as “top” or “dominant” (the one who takes the lead and tells someone else what to do). Four participants reported situations in which they had to prove themselves before being supported, or where they had to initiate interactions with other people. This notion of proving oneself was attributed to safety.

Of course, safety is an important consideration, and certain people at play parties therefore act as party monitors to ensure that the rules are respected. But one respondent believed that people with disabilities were questioned more than others.

In her analysis of the research, Paterson suggested that the notion of proving oneself reflects deeply entrenched notions regarding people with disabilities. The comments regarding the diversity of people and bodies involved in the community indicate some room for acceptance of non-normative bodies. But questions arise about the extent to which people with disabilities are seen as “acceptable.” The findings indicate the positive impact that the community and lifestyle have had on some participants, and yet the notion of safety can be used as a method of gatekeeping. Paterson concluded that future research must look at how all sexual minorities are silenced and must take into consideration the political nature of disability and sexuality.

During the subsequent discussion, Paterson was asked if she had experienced any resistance in the disability community to talking about sex in the context of disability. She commented that she had not experienced explicit resistance, but she added that much resistance has come in the form of silence.

One participant suggested that if the communities are not welcoming to people with disabilities, then those people may choose more risky alternatives, such as meeting people online. Paterson said that, in her limited data, she had not found that situation, but she also said that she had not considered the issue. She agreed with a participant that these communities can be spaces for negotiation of identity—something that can occur in nonverbal ways.

Disability Research Through a Community-based Project: An Example of One DisAbled Student

Dolkar Peljor, Masters student, Queen’s University

Dolkar Peljor discussed a project she had conducted as an undergraduate student at Trent University in Peterborough. She explained that she had opted for a community-based project and had been partnered with a host organization, a Down Syndrome support group.

People with Down Syndrome graduate from high school at 21 with a modified diploma and little opportunity for participation in the community. Because of their disability, they require accommodations and community resources to reach their full potential.

The purpose of Peljor’s study was to determine the programming needs of young adults with Down Syndrome in the local community. Interviews were conducted with members of a Down Syndrome support group and with service providers for people with developmental disabilities. The findings, analysis, and recommendations were formulated in a report that was presented to the community organization.

In her research, Peljor found that young adults with Down Syndrome require support programs dedicated to increasing self-sufficiency and personal empowerment. They also require programs that are accessible—that is, affordable, accommodating, available, and considerate of transportation needs.

In her analysis, Peljor observed that the members of the Down Syndrome support group and the service providers shared the same goal in terms of the future for people with developmental disabilities: to increase their independence as much as possible, always recognizing the need for public support programs. Generally, programs meet a wide variety of needs and provide the appropriate accommodations while remaining affordable. But most existing programs are closed to new clients, and people are then wait-listed for indefinite periods. Program supports and services for young adults with developmental disabilities are lacking. Services are provided on an ad hoc, as-needed basis. There is a focus on transition planning, but transition programming to support young adults with developmental disabilities is lacking. Transportation is a significant accessibility issue, because service providers feel that the clients have the responsibility to transport themselves.

Like Paterson, Peljor said that she was aiming to emulate the emancipatory research paradigm: to prioritize people with disabilities and their concerns throughout the entire process with the aim of facilitating their empowerment, and to share her findings with other people with disabilities. This paradigm also seeks to influence policymakers to empower people with disabilities.

One of the constraints encountered in the research was the challenge of defining quality of life. To be able to evaluate the lives of people with Down Syndrome and those of non-disabled people, and to determine the programs needed to bridge the two, Peljor had to figure out “what life [is] supposed to be like for each group.” This is an ongoing issue that needs to be addressed, she commented.

Finally, Peljor mentioned the empowering effects of undertaking disability research on students with disabilities: it was a great opportunity to get involved in the disability community and to learn about services and programs.

Peljor concluded that this project, which was undertaken through the Trent Centre for Community-based Education, was another avenue for expanding the scope of disability studies. Disability studies deserves greater credibility in the mainstream—especially the emancipatory research paradigm—and students require continued support to conduct these studies.

During the discussion, Peljor commented that more programs for young adults are needed, including informal social functions, employment programs, training, and life skills programs.

Participants then discussed how disability studies as a discipline is growing in Canada, Europe, and the United States. Hansen said that “everybody brings a richness, because we perceive differently, but because disability studies is a new area, it is moving and growing in new directions.” It must grow to reflect the richness.

Right now, said Peljor, no one area is ahead or behind. The best approach is to respect positions from which various people are coming. She did present one caveat, however: disability studies are “sexy” now and can be used to capture funds, but researchers must engage with the underlying “old school” mentality. “Having the language doesn’t mean that you are engaging a positive disability studies perspective.”

Chan suggested that disability studies reflects a growing trend across the globe. Noting that more and more undergraduate programs are emerging in this area, he said that it is important not to limit study to the graduate level.

Asked how students could encourage schools to embrace disability studies, Hansen replied, “Ask for it. Lobby for it.”

The speakers all emphasized that disability studies can emerge from all fields—business, education, psychology, medicine, and many others. At the same time, students can also enter disability studies to look at the more conventional matters such as physical access.

Election Results

The NEADS election results were presented at the start of the closing session:

• British Columbia representative: Jewelles Smith
• Alberta representative: Agnes Towkow
• Saskatchewan representative: Lena Cook
• Manitoba representative: Tim McIsaac
• Ontario representative: Margaret Shalma
• Quebec representative: Paulo Monteagudo
• New Brunswick representative: Natalie Fougère
• Newfoundland and Labrador representative: Terry McDonald
• Prince Edward Island representative: Fraser MacPhee
• Open representative: Mahadeo Sukhai

Concluding Remarks

Conference Co-chair Kim Gerritsen thanked the conference sponsors:

• Equity Through Education – BMO Capital Markets
• BMO Financial Group
• Scotiabank Group
• Braille Jymico
• Delta Ottawa Hotels and Suites
• CHUM Limited
• TD Bank Financial Group
• Travel Cuts
• Jobpostings
• Government of Canada

Gerritsen also thanked the participants, presenters, NEADS board of directors, staff, and volunteers.

Jennison Asuncion then acknowledged Gerritsen for taking on the role of Conference Chair and lauded the conference for being a huge success. He also thanked the conference organizers, Golden Planners and acknowledged Heather Grant from GP who was in the room.

Several participants commented on their experience at the conference, with one saying that this was the best NEADS conference she had ever attended. Another thanked the organizers, saying that the conference would help her get through university and the job market with a learning disability. One person who was attending for the first time said that the best part was meeting people. He added, “My views are changing—we are not people with faults or problems but God’s creatures.”