A Life Of One’s Own

In the Winter 1998 issue, we introduced ABILITIES readers to a research study investigating transitions to independent living. This project is now complete.

In this qualitative study a team of researchers including consumers, service providers and academics aimed to develop an accurate picture of the struggles and triumphs of real people, giving study participants an opportunity to fill in details, colour and texture that could never be captured in a survey approach. We are proud of our success. Team members with life-long disabilities were involved at every stage of research design, data collection, analysis and synthesis, as well as in the final step, a public forum presenting the research findings to people with disabilities. The forum provided consumers with information about the research and allowed final input from the community before delivery of our report to West Park Hospital in Toronto, the project’s sponsor.

An Overview of People Interviewed

-20 people (10 women, 10 men) aged 21 to 50 (average age 31)

-16 people who use wheelchairs, 10 of this group used electric chairs

-Seven people who use communication aids (most of these participants had been excluded from research projects in the past)

-Members of five different cultural groups

-Four persons living with parents; four living in their own home; 11 living in Support Service Living Units (SSLUs); and two in transition.

This relatively small sample of individuals all had experience with independent living or had worked actively towards living life more independently. We are aware that many people with physical disabilities have not yet managed to increase their level of independence significantly and our research helped to illuminate the reasons.

Obstacles and Barriers

Our main research finding is that it is extraordinarily difficult for young people with disabilities to make the transition to independence. Half our participants had no initial support from their families and many met with active opposition or resistance when they first talked about becoming more independent.

All participants encountered barriers in the educational system, in working with helping professionals and from society at large. A number of participants said that they were actively discouraged from being more independent, even told they were stupid.

Lifestyle expectations of others were often extremely low and their own hopes and expectations were not taken seriously or met with efforts to make them more realistic. Inadequate resources to facilitate their transition: attendant services, housing, adaptive equipment, continuing education and meaningful work, were an issue for all participants.

Ingredients of Success

Despite these obstacles, the majority of participants were happy with the life they had created. The most important ingredients of success appeared to be an inner spark of self-confidence and determination in combination with parental and sibling support, or discovery of supportive individuals and role models outside the parental home.

The participants whose families moved past their initial resistance to provide on-going support, as well as the small number whose parents actively encouraged independence, appeared to do particularly well. Availability of housing options, including attendant-supported living arrangements, was extremely important. Developing key professional contacts was also essential.

A clear message from all participants is that it is vital to feel good about yourself, to have dreams, and to pursue goals even if you encounter resistance or fear mistakes.

When we presented our findings at the public forum at Gage Transitions to Independent Living in Toronto (a program of West Park Hospital), the response was enthusiastic. A follow-up Task Force was spontaneously struck by audience members at the meeting’s conclusion.

People interested in participating in the Task Force should contact Laura Forma at the Gage (416) 481-0868. To learn more about the research or to obtain a copy of the full report, contact Mark Tonack at West Park Hospital (416) 243-3600 extension 4518.

Lessons Learned from the Research

For Consumers

Believe in yourself. Have goals and take small steps toward reaching them. Take risks when necessary. Don’t wait to get started. And, above all, don’t give up. Develop good supports. Manage your attendant services well. Tell people what you want. Find the coaching or educational program that meets your needs.

For Parents

Have high expectations for the future of your son or daughter. Encourage them to dream, to take chances, to make choices and to learn from mistakes. Encourage them to make connections and to use resources such as attendant services while they are still living at home.

For Professionals

Respect the expertise of people with disabilities. Use all of your skills and resources to help them realize their own goals, rather than your goals for them. Help them to build self-confidence.

Use your professional authority to advocate on their behalf when policies and institutional procedures present barriers or restrictions. Challenge stereotypes and stand up against discrimination.