Saturday, November 02, 2013


In the world I would like to see, people in responsible positions would be able to distinguish between those who have adjusted to disabilities, and those whose disabilities have been cured. If they could make this distinction, they would see the need for accommodations, and they would act differently. Of those who have adjusted they would ask: “What more can I do to make your life easier?” To those who have been cured, they could say: “Well, I guess you don’t need me any more.” Over the years, as disabilities have presented themselves to us, our family has become the poster child for adjusting to disabilities. We have made pleading phone calls, devised work-arounds, researched possibilities. Take it from me, a disability that has been adjusted to has not been cured. It is present morning, noon and night, 7 days a week, 52 weeks a year. I find that professionals and experts tend to think of adjusting to disability as something that is done once. But actually, it is done every day, a constant process of making small and large modifications to compensate for the privileges the disability takes away, the privilege of easy movement, of using services, of casually deciding to take a walk and taking it. A person who can manage steps with difficulty is better off going out than staying at home. But he faces an organizational challenge every time he approaches a front step that has no railing. A driver whose reading skills are not sophisticated is judged competent to drive and may make a living doing so. But he must search for alternate parking when simple meters are replaced with “smart meters” that require the ability to read a screen and respond to detailed commands. A competent blind traveller would be foolish to stay home and not participate in the community. But she must take the chance of walking on a red light when the signal is designed for sighted people only. An adjustment made one day is made again on the next, and the next, and the next. In the world I would like to see, the simple parking meter which operated on change would not have been thoughtlessly replaced by the complex SMART meter that can only be operated by people with sophisticated reading skills. Every new home would be build with railings on its front steps. Every crosswalk that has a changing light would have an audible signal. These modifications are all completely possible in our society, but it would take a lot of energy to advocate for them. People who have adjusted to disability spend a lot of effort adjusting on a daily basis, leaving them with limited energy to devote to advocacy. In the world I would like to see, people in responsible positions would take up the challenge of making changes without the force of advocacy to propel them. Would they be more inclined to do so if they appreciated how much energy it takes to adjust to disability? Would they be more inclined if they understood the difference between the daily lives of those who have adjusted to disabilities and those whose disabilities have been cured? So tell me that history has proven that the changes which have benefited people with disabilities have come about only when people with disabilities have put aside the time and energy to fight for them. Tell me there is no way that is going to change. Tell me this, and I’ll admit that you are probably right. But I am THE HOPE LADY after all, so I continue to hope that things can be better. Most improvements start there—with the hope that things can be better. In the meantime, we’ll adjust. Practice makes perfect. We sure do spend a lot of time in our family these days understanding the impact of, and adjusting to disabilities.

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