This is part 3 in of a series that I’ll hopefully be able to finish today (yep, that did not happen, started it a long time ago and just couldn’t manage… sorry for the delay.) The first two posts were basically just backstory for this one. In Part 1 I explained some of my history growing up disabled, and the encounters I had had with disabled communities back then. In Part 2 I explained my current predicament — how annoying my disability, and the conversations that it evokes, can be out in public on a daily basis — and how that situation makes me a rather bad fit for vis-a-vis advocacy work.
The community that I am in now is, honestly, in dire need of more advocacy work, but I just do not have the mental energy or the strength for that right now. Many here think I’m robbing them blind for receiving social security disability in the first place, the absolute last thing I want is to have to confront them in a public venue.
But I have slowly been making more and more disabled friends online lately, many of them are very involved in disability rights and advocacy, and I’ve been wondering more and more if perhaps I shouldn’t be more involved, myself. It’s possible that I could manage it online, but I’m not sure. The thing is, I feel completely inadequate. And that seems rather silly, considering the fact that I’ve been dealing with a physical disability since I was 8 years old. But this disability I have is nonstandard, in a rather infuriating way.
There are three basic types of disabilities: static disabilities, acquired through illness or injury; genetic defects or inherited disorders that are non-progressive; and progressive disabilities, which can be acquired or genetic. Each of these groups faces a different set of issues and challenges, and our life experiences can be vastly different because of them.
For the most part, the first group lived some length of ‘normal’ life before being thrust into the world of disabilities by a freak accident or illness of some sort. Generally they sustain their injury, have to adjust to a new life that includes and accounts for that injury, and then go on with life. There is nothing small about having to deal with a life altering injury or illness. The pain is sometimes enormous (and often continues long-term), there is often PTSD to deal with, recovery can be arduous and seem impossible, learning to become dependent on others, on meds and/or equipment can be seem near impossible, and the shock of losing what you once had is enormous.
But those who are born with disabilities do not face this same experience. Those born with non-progressive disabilities have a whole other set of issues. The view these people have of their disability is often shaped almost entirely by the way in which they were raised.
Raised in a home where they were treated like anyone else, encouraged to get involved, with adults and community members on their side — to advocate for accommodations they needed — many of these people do not even consider themselves disabled, except by the attitudes and obstacles put in their path by society at large. Maybe they were born blind, deaf, with deformities, maybe they require a wheelchair or an alternate communication device… whatever made them different only made them different, not disabled. These people often live up to their potential in ways that other disabled people can only dream of… and unfortunately it leads some to declare that disability is only a frame of mind, which sounds great, unless you’re a disabled person who’s truly struggling. (Some of them, once they leave the bubble of this rather sheltered and positive upbringing, may become seemingly constantly angry against society at large, as they find themselves confronted over and over with disabling obstacles.)
Being raised in a different sort of home can lead to a completely different view of one’s disability. Some children born with disabilities learn from an early age that they are sub-human, either because people around them are telling them that, or because the way they are treated implies that. Bullying often starts in the home. (Many older generations were shipped off to group homes or hospitals and didn’t even have the benefit of being raised in a home… this still happens, but not nearly as often.) Even when the home is fine, though, if the adults in their lives aren’t supportive in the right ways, they may face relentless bullying and obstacles throughout their young lives. If it doesn’t break them, they will learn coping mechanisms, though, and eventually come to a place where they’ve learned how to compensate for their disabilities enough to get through their day to day life at whatever level they can manage, with whatever supports they are able to procure.
The third group ends up with the issues compounded from both of the other groups. Those of us born with a progressive genetic disorder, or those who have acquired a progressive disability, often make it through part of our lives seemingly normal, or with minimal issues, then at some point the world starts falling apart, and never stops.
I imagine the process is a little easier on those who make it to adulthood before they start declining. Barring a tumultuous upbringing for other reasons, they’ve probably formed a solid self-identity, gotten through the torment of the teenage years, and had normal relationships along the way. They’ve got a house built on solid ground, so to speak, that can probably better withstand the storms that the disability will bring.
For those of us who got hit as children, though, it can be a very rough row to hoe. A child’s body is constantly growing and changing. Children are constantly learning and discovering new things they can do, and most people recall their childhoods with a sense of wonder and excitement for this reason. For a child with a progressive disability, though, the constant changes and new discoveries can bring a sense of dread.
Where most childhoods follow a pattern of slowly learning more and more independence, a childhood with a progressive disability is a hodge-podge of starts and stops. You learn how to walk, then you get to figure out how to deal with not being able to walk, or not as much. You learn how to do cartwheels and then one day you learn how to cope with the sudden realization that you will never be able to do another cartwheel. You get really good at a sport, but all that use of your nerves starts to harm them so you have to say goodbye to it forever. You learn to tie your shoes, and then you learn how to still tie your shoes with hands that don’t move the right way, and then you maybe learn how to let someone else tie your shoes for you, or how to find supportive shoes that don’t have to be tied. You learn to button your clothes, and then you learn how to alter your wardrobe, because you never ever want to get stuck again in a pair of pants you can’t get out of.
You learn to be fiercely independent, and take care of yourself, until you do too much and get stuck somewhere, unable to move, praying that someone will find you before it gets dark, and that you’ll be able to live through the humiliation.
These may all seem like little things, especially to someone who has dealt with a far more disabling condition, but it’s not so much the individual things themselves but the constant pattern of losing what you work so hard to gain. Children tend to be very proud of their accomplishments… when they work hard and something doesn’t work it hurts them a great deal. Just think of your own childhood and I’m sure you’ll remember at least a time or two where you were very proud of something, went to brag to your favorite adult, and got shot down. I’d venture to guess it still stings. The hurt of losing independence one has worked hard to gain is much more jarring, and lasts much longer.
Besides, the little things can actually be harder to deal with than the big ones, at least for me. When my hands atrophied in college it was a huge deal. It was obvious, visible, all you had to do was look at my hands and you could see something was wrong. People offered help when I needed it, doctors took notice, no one looked at me funny when I shook their hand limply, because they could tell it was my only option. I accepted help because it was obviously my own choice in some situations. When I needed a different type of door handle installed on my dorm room no one argued about it, they just installed it for me. I didn’t have to fret about whether to try to fill out my own forms ad doctor’s offices and such, because it wasn’t even an option.
But my condition is particularly bizarre, in that my nerves manage to heal themselves partially, from time to time, and after a few years of not overusing my hands they actually gained back some function and the muscles recovered. They look normal now, and much of the function I lost has returned. *I* know that I can’t use them much, or they will return to the state they were in before (and on bad days they shut down just the same or worse than they were) but no one can look at me and tell that. They see normal hands. If they looked closely they might notice that I can’t really straighten them out completely, that they shake sometimes and with certain motions, that I can’t really squeeze tightly, that if I make a fist my hand gets stuck there… but no one looks that closely. They expect me to be able to use them, because it looks like I can use them. If I ask for help with things now I often get funny looks. Even when I don’t get the funny looks, I feel funny asking for the help.
While having my hands atrophy and shut down was more disabling when it came to day to day tasks, it was not as frustrating for me in my interpersonal relationships as it is to have partial/intermittent use, and my pride was much less an issue. And I’ve finally come to the point I was wanting to speak to with this entire series of blog posts.
I do not feel up to the task of advocacy work. I feel inadequate.
In my personal life, advocacy is nearly impossible for me. I may be too helpless to get by with the level of independence I’m used to, but I’m not disabled enough to be comfortable talking about the help I need, or asking for it. And when help is offered, I find it nearly impossible to accept it.
As far as the community is concerned, I can’t go out and give people a pep talk about living with disability, or overcoming the limitations of a disability — as so many other people do — because I’d feel completely ridiculous. I think most people, seeing me on my good days, with no easily noticeable issues, would feel the same way. Despite my very real disability, I would feel like a poser.
I’m that person who parks in a handicapped spot and gets out and walks in somewhere with no trouble. It infuriates you, because real handicapped people need that spot. Had you seen me try to walk from further out in the parking lot, you might have gotten to watch me stumble and fall, or perhaps get stuck, unable to walk back to my car. The only reason I can walk in and back out with no problem is because the distance is so short. But you don’t know that, you judge me on what you see, and I can’t really fault you for that.
In the world of online advocacy work, perhaps this is all unimportant. Perhaps I can become more involved. But I’m not sure that advocacy work can stay online and actually do any good at all. What do you think?