When you enter the parallel universe of disability whether through accident, illness, or birth—yours or someone else’s—what is most shocking is the level of nastiness you can encounter. It’s mind-boggling really.
I do not intend to be depressing here—you can also encounter a lot that is heartwarming and even miraculous and these are awesome gifts. Talking about the heartwarming is inspiring and really pulls the heartstrings of people who have not experienced disability in a personal, intimate way.
Inspiration is awesome. The folks in the trenches also benefit from recognition of the other situations in our lives and hands-on help to get through them.
Disability means that a part of your body works differently—these differences impact people’s lives in varying ways depending on where, when, and with whom they find themselves and what structures exist in that space.
For example, an allergy is a disability that means your immune system works differently. On a midwinter day out on the frozen tundra, this may not be much of a problem, a surprise encounter with a rose garden on warm spring day—depending on how your allergy affects you—could be an entirely different matter.
Do you have antihistamines with you—or have a friend along who does? Will that antihistamine make you drowsy? Will you be able to get a ride home if it does? Are you with your adult friends or your 4 year old daughter? Is there a nice place with filtered and conditioned air handy? Or a phone?
All of these determine the extent of how disabling your disability experience will be—and it is subject to change.
This is true for all disabilities: I have a friend who has Cerebral Palsy. At her house she can unlock the door, cook, clean, use the computer, the bathroom, the light switches and everything else pretty much on her own.
At my house she can’t do any of those things alone.
This has nothing to do with the 15 minute ride from her house to mine (snarky comments about my driving will NOT be published!) It is because my environment does not accommodate her needs.
This is not nastiness, this is the nature of disability.
Nastiness comes from external sources that purposely or inadvertently sabotage the environments or supports a person needs to have access to their life—thereby making a difference disabling.
There’s my friend’s son who at the end of school last year had developed a group of good student behaviors which he was using in the regular classroom with success. This year the supports he needs to succeed were taken away from him and his classroom teachers told everyone that this is because he cannot learn in a regular class. His student behaviors deteriorated and his family disputed this. He has recently been evaluated and they have discovered that he is able to do much of his academic work at grade level—implying that he was learning in that classroom despite the inappropriate supports the teachers provided. (A similar shift happened to my daughter several years ago.)
Sometimes the reasons for this are the personal paradigms of the people involved.
In the allergy example if you are out with your friend who would never leave the house without a pharmacy, a phone and a full first-aid kit in her purse (because you never know…) your experience will be different than if your are with your friend who does not drive, use cell phones or put chemicals into her body that are not organically and locally grown. And if the people who find you gasping in the rose garden decide that it’s because you’re drunk or deserve it somehow they may well leave you there. Other people’s paradigms can create your reality.
Sometimes there are entire systems that undermine success. The district that wants to get funding for a special class may be vested in filling that class up—regardless of your child’s actual needs, for example. The institution that brings funding to a region may resist efforts to develop smaller community-based housing options despite evidence that those options are more cost-effective and provide better quality of life for their residents.
Other examples are insurance companies that deny things like wheelchairs and hearing aides saying things like “this is not medically necessary inside of your house.” (As if isolating a person in their house is a medically sound decision.)
Insurance is a racket—one mom I know of pays nearly $600 per month for the privilege of being routinely denied things like wheelchairs and standing tables and medications for her son. The only thing she pays more for is her mortgage—and when she wants to she can sell her house and keep the profits… If you are looking for a cause that needs fighting, insurance issues would keep you busy!!! But I digress…
There are examples of nastiness—some of it quite personal, some of it systemic—on many fronts. There are disability rights conflicts about healthcare, voting, employment, education, housing, and more ongoing—today. Check out the current issue of the Disability Blog Carnival to read about people’s experiences with professionals and their tips for success.
Pain. The result of nastiness is pain. It is exhausting, discouraging (that is dis-couraging) and sometimes overwhelming.
To handle the pain we can be thrown into a few modes—some more productive than others!
Avoidance. We accept anything—we take only paths without resistance. We smile and thank everyone for anything or nothing. We tell ourselves that the sow’s ear we receive is just as good as a silk purse (when what we really need is the blue vinyl one that is just the right size and matches our shoes!) We take no stands, we have no conflicts, we make no gains, we put up with whatever we must to feel better, we have whatever quality of life THEY allow us to have, AND an ulcer.
Aggressive Assault. We accept nothing. We fight everything all the time with every weapon we can think of—no holds barred. We are never satisfied because things could always be better. We turn down the sow’s ear, say that the blue vinyl should be silk and the silk purse should be diamond-studded—and if it is then it’s too heavy. We have tons of conflicts, we appreciate none of the gains we might make, we have a miserable quality of life no matter what AND an ulcer.
Advocacy. We speak up. We ask for what we need, we have many strategies—we persuade and negotiate, but if it turns we’re facing a nail we find a hammer. We respect ourselves and others and are proud of the things we achieve. We hold out for the blue vinyl purse if that is what we need—and are happy with it (it really does look great with those shoes!) We know we are never done, but we also know that advocacy is for problem-solving and best friends, hobbies and therapy are to make us feel better. We have a shot at a nice quality of life, and most of the time, avoid the ulcers….
Advocacy can turn nastiness into those heartwarming stories we all love to hear.
I am the mother of three, wife of one. I am a Partners in Policymaking graduate and a committed disability advocate. I want to catch up on my scrapbooking, learn more about art-journaling, get my house in order, read all the books I have set aside to read and change the world--not necessarily in that order. The opinions in this blog are my own and not those of any of employers.