Disability Services: Does One Size Fit All? Part 1 of 2

The current dialogue around the potential merging of services for people with disabilities, and particularly State Services for the Blind, has caused me to think about several questions. Is there a “one size fits all,” solution to this discussion?

How will consumers with all types of disabilities be best served? Why has there been an historic separation of services for people who are blind or visually impaired? Are the original reasons for the separation of services still valid? What concerns and fears exist within the blind community that motivates people who are blind or visually impaired to remain separate?

Personal background

As someone who is blind, I have a unique perspective gained from years of experience. I have been a consumer of Minnesota State Services for the Blind since I was a child, I co-founded and ran an organization of and for people who are blind and visually impaired for 13 years, and I have done cross-disability work for over 10 years, and have worked in a Center for Independent Living for six years. I am one of a small number of people who are blind who have chosen to live and work in the cross-disability community.

This does not mean that I don’t associate and have friendships with other people who are blind, to the contrary, I long ago recognized the need to spend time only with other people who are blind. It is the reason I co-founded Candle In The Window with two other blind women in 1986. Candle, as it came to be called, was an organization solely for people who are blind and visually impaired. The organization provided personal growth and cultural programming for blind and visually impaired men and women from all over the United States.

Throughout my schooling I was mainstreamed and had minimal contact with other blind and visually impaired people. In fact my “sight saving” teachers discouraged me from associating with other blind folks and encouraged association with sighted people in an effort to ensure that I could integrate into sighted society when I graduated from high school. It worked, and until my thirties I had little contact with other blind people.

Then, when I went to get my first Seeing Eye Dog, I discovered there were others who had the same experience of being separated from the people who could best understand my life’s experience.

Context

The mainstream movement began in the 50’s and most of the baby boomers that are blind had experiences similar to mine. As we developed the concept of Candle, we found there were many blind folks looking to build relationships with other blind and visually impaired people. Over the thirteen years I was involved with Candle, I heard repeatedly how people who were blind and had been mainstreamed hadn’t really developed relationships with other blind people until they got into their thirties and forties. There were two exceptions to this: people who went to residential schools for the blind, and people who chose to join one of the organizations for the blind, such as The National Federation of the Blind or The American Council of the blind. By far, many more people chose not to affiliate with either organization, and mainstreaming was the growing trend in the education of people who were blind. This meant people went without developing those significant relationships.

Common Ground

Candle In The Window provided a place for people to come together and talk about everything from technology to spirituality. It was a place where participants knew that their needs would be met. They would have materials in alternate format; they would be oriented to the conference site and to the lodge they would call home for five days so that they could be independently mobile; they would be provided with tactile maps of the grounds; even the trash cans were marked with braille to distinguish between trash and recycling. Everything would be handled down to the smallest detail, and all of this would be done without their having to ask. It was like having their own desert island get-away. This was done to reduce the external stresses a person with a disability faces on a daily basis.

With all of these details taken care of by the Candle Board, who were all blind themselves, participants could focus on the reason for being there: to learn and grow. This kind of community building proved quite valuable for most Candle participants.

Statistics

Approximately 2.5 million of the population in the U.S. is considered to be blind or visually impaired. In Minnesota, approximately 120,000 people are considered to have a visual impairment, and that number is expected to grow by 25 to 30 percent by the year 2030, according to the 2030 study conducted by The Citizens League. In addition, many of those acquiring blindness as a disability, along with those who are already blind, may experience secondary or tertiary disabilities as a result of the aging process. During the year 2000, Minnesota State Services for the Blind served 4,927 individuals with visual impairments and 2,147 of those people were age 55 or over.

Editor’s Note: Next month, in Part 2, Lolly gives some history on the friction between people in the blind community and those in the larger community of people with disabilities, and suggests some ways to reduce that friction and work together successfully.