I have been thinking a lot about my last post. I have been thinking a lot about why it makes me so uncomfortable when I am faced with the possibility, over here in the Former Soviet Union, of the ‘invalid’ discount. And like just about every aspect of being an Aided Mobilizer in a world that usually only recognizes and validates the “normal” body, it turns out to be complicated, and context specific. I realized:
A.) I am often uncomfortable accepting the ‘invalid’ discount in the Former USSR, because most places that offer it are inadequately funded cultural institutions, which already offer cheap admission, especially if you have a university ID. If there is any type of institution I’d like to help support financially in what ever small way I can, this is it.
B.) I’m confused about the ‘invalid’ discount. I’m not sure if it is offered, because these institutions are trying to recognize their inaccessibility. Most are, truth be told, difficult to access if you use a walking aid, and all but impossible if you use a wheelchair. (E.g: No functional lifts, no ramps or ramps that are too steep for any one to actually use, tripping hazards galore, narrow doorways, etc. etc.) Perhaps they offer the discount, because they know they are inaccessible and they mean it as a compensatory gesture? Or…Maybe it is purely economic, based on the assumption that no Aided Mobilizer could possibly function well enough in society to support himself or herself financially? This assumption may be somewhat justified, if not necessarily, in terms of attitudes toward bodies that move differently, all that empowering. In Russia at least, there is as yet no ADA type law that protects the disabled and guarantees equal access to work and reasonable accommodation. Plus the lack of accessible infrastructure obviously doesn’t make it any easier to go out and find work. But it is also a fact that until the collapse of the Soviet Union in 1991, category 1 invalids (those people who use wheelchairs) were FORBIDDEN from entering university. That’s right. If you used a wheelchair, the Soviet state refused to educate you, because since your body deviated from the state dictated standard, since it was flawed and “dysfunctional”, you weren’t worth educating. Or to put it another way, since you weren’t ever going to be able to function and contribute to Soviet society, why should the state waste its time and effort on you? In fairness, the Soviet state did offer some form of “compensation” for this heinous act of discrimination. That is, the State didn’t leave those it designated as helpless and useless entirely out in the cold. Category I individuals were offered some income assistance (though meager), housing (however inaccessible, i.e. without lifts that could accommodate wheelchairs, ensuring that once you entered your apartment, you pretty much didn’t go out), medical care (This is an area of genuine exception. In the Soviet period, doctors made house calls and special ambulances helped folks get from their apartments to the hospital or clinic.), and of course various discounts at selected cultural institutions, should you be able to leave your apartment and get to a (inaccessible) museum. You wouldn’t starve. And you would be able to see a doctor. But could you have a job or education that allows you to achieve your full intellectual potential, that gives you a sense of value and self-worth, that staves off the inevitable boredom that accompanies being a prisoner in your own home, that allows you to feel you are contributing something? Out of the question.
The attitude of the State was a bit different toward those who could walk. If you could walk, even with assistance, you could still obtain an education and a job. But societal infrastructure still remained stubbornly inaccessible, and no efforts were ever extended to make new Soviet construction more accessible in any way. Perhaps this is because building engineers and architects assumed that if someone was disabled, the other members of the collective would always step up to help him or her surmount these obstacles. Given how quickly and how frequently people here lend their hands to such efforts, it wouldn’t surprise we one bit it this was the logic of Soviet civic planning. It’s great to feel supported in this way, to know that you will probably have help navigating difficult terrain if you need it. But. But. The lack of accessible infrastructure still sends a powerful message, as does the constant need to rely on others for basic day to day city movements: This place is not for you. The problem is not the way things are built. The problem is you. It is because your body is incorrect and defective, a flawed factory model, that it cannot navigate the world like the rest of the “normal” bodies can. We pity you.
So as you can see, the innocent seeming post-Soviet ‘invalid’ museum discount is undergirded by a difficult and complicated cultural history. It is chuck full of positives and negatives. It is driven on the one hand by a strong and powerful (re: good good) collective that helps those members it sees struggling, and on the other hand by disempowering perspective that equates disability, to varying degrees, with uselessness and capability. And of course, OF COURSE, this attitude is not limited to post-Soviet space. It exists in the good ole’ US of A too. It is, however, expressed differently and tends to creep up in different contexts, because A.) there really isn’t the same sense of a collective society B.) there is more accessible infrastructure. But pity? And disability discrimination? Don’t worry: in America we have plenty of both. But in order to articulate the different ways in which I see these things expressed in American, from my personal perspective as an Aided Mobilizer, I’m going to need a whole new post. It will come; stay tuned.
But one last thing. The last thing I want anyone to take from this post is a sense that I do not support, in my own country (and especially during an election cycle where one of the hottest topics is defunding the Federal government), federal funding for programs that support people with disabilities financially, medically, or otherwise. I am proud that my tax dollars go toward SSI, disability, medicare, implementing ADA standards during new construction, etc. etc. In order for folks to chose an educational path that is right for them, to find a job at which they excel, they have to have their basic needs met and their rights protected. And these days Federal assistance is so meager, if one is able to overcome the bureaucratic barriers to obtaining it, that it can’t even do that. I suppose, what I’d really like to see are more Federal programs that help folks meet these needs, while also reforming the rest of the world to maximize accessibility and promote questions, discussions, standards, and information that alter attitudes about disability and capability. Idealistic, I know. But you have to start somewhere.