As a young girl, I was in awe of Helen Keller
. This amazing woman, born in 1880 in Tuscumbia, AL, lost her both her vision and hearing following an illness at 19 months. She went on to become an author and political activist following completion of her formal education at Radcliffe College in Cambridge, MA. She was the first person with deafblindness
to graduate with a Bachelor of Arts degree. I love this quote of hers:
I seldom think of my limitations, and they never make me sad. Perhaps there is just a touch of yearning at times; but it is vague, like a breeze among flowers.
The message resonates and reminds me of my reasons for choosing a career in disability advocacy many years ago, promoting opportunities for individuals who faced multiple challenges and barriers to independence.
Most of these challenges had less to do with the person with a disability, and more to do with innumerable barriers in the community. At the time, many of those barriers were fairly easy to solve. Install some curb cuts, designate some parking spaces and retrofit public bathrooms to accommodate users in wheelchairs. Voila! We increased access for many citizens who could not previously get around.
But other challenges were harder to solve, such as attitudinal barriers. We’ve come a long way, but some employers are still resistant to hiring a worker with a disability, fearing liability, low productivity and accommodation costs. Most of these fears are baseless, but attitudes are hard to change. And the problem is amplified for individuals with “invisible” disabilities such as diabetes, epilepsy, autoimmune diseases and other less apparent conditions. Then we have the many stigmas and misconceptions associated with mental (emotional) and cognitive (intellectual) disabilities.
The problem is not just individual attitudes and perceptions. As communities, we have yet to fully embrace the view that disability is an environmental phenomenon, not just a physiological one. What that means is that individuals with physical, emotional and intellectual differences should no longer be viewed by an outdated medical model in which the goal is to “fix” them, then introduce or return them to society if they manage to “fit in.” Yes, persons with disabilities have responsibilities as community members. But functional limitations are too often increased by barriers in the environment. And it is those barriers that deserve our time and attention.
I learned a lot about this perspective from my former colleague Mark Johnson
, Director of Advocacy at the Shepherd Center
in Atlanta, a world-renowned medical, rehabilitation and research hospital for spinal cord injuries and brain injuries. Every time I talk about Mark, I turn all hero-worshipper, which is exactly the opposite of what he wants.
But understand that Mark is a pioneer of the national disability rights movement, and he continues to work 24/7 to make a difference. And make a difference he has, less through charm and more often through aggressive action to hold communities and policy makers accountable for ensuring access for individuals with disabilities. Years ago, he shared a story that set my own thinking straight. Here it is:
Imagine Joe, a young man with mental retardation who goes to high school and has a lot of special educators and other professionals coming together with Joe and his family to create an individualized education plan to ensure that Joe graduates with an agreed-upon set of basic skills. One of those skills is money management. Everyone wants to make sure Joe knows how to manage his money in the future, and that includes balancing a checkbook.
So Joe receives weekly instruction in checkbook balancing. And every one meets periodically to review his progress in balancing his pretend checkbook. But Joe fails to master this particular skill. Unfortunate, because it’s one of the skills deemed important for moving on to employment in the real world.
So after graduation, Joe attends a local center for vocational training and adult education. Consistent with high school, one of Joe’s educational goals is to learn how to balance a checkbook. This skill, along with others, is still deemed important for moving on to a real job.
Along comes Mark Johnson, or some other disability advocate, who understands the need to flip the problem. The advocate accompanies Joe to the local bank and asks to speak with the bank manager. The advocate explains that Joe will soon go to work and earn a modest amount of money per month. Joe would like to deposit this money at this manager’s bank, but could use some help balancing his checkbook each month. Is this possible, or, should Joe go down the street to another bank?
Most of the time, problem solved.
And the lesson here is that it’s less about fixing Joe and more about finding reasonable ways to accommodate his differences and support him as he strives for independence in the community. When Joe is reasonably accommodated, we all win.
Now think of the public policy implications of Mark’s seemingly simple example. If we view disability as influenced by environmental barriers, where should we put our public dollars as we strive to address the needs of citizens with disabilities? I could research funding at the national, state and local levels and determine how much goes into programs aimed at fixing the person and how much goes toward creating environmental change. But I don’t need to do the research.
After years immersed in the disability service systems and related public policy at the community, state and national levels, I know the answer. We still spend lots of money trying to fix people whose major problem is a society that doesn’t know how to accommodate them.
(A side note to my special education friends. You are needed! Individuals with disabilities need multiple supports and my above thoughts are not a criticism of your work. But it’s critical that we address the right things. I’ve heard many of you lament that your students could succeed, if only they had more parental support. Your concerns affirm the notion that the problem does not rest solely with the child, but with the environment in which the child has been raised and is trying to function.)
Regular readers know that I write about a range of family matters in our community. Disability is a natural part of the human experience
and, therefore, something eventually faced by every family. What is your perspective of our community’s commitment to increasing access for our family members who happen to have a disability?