Adult with disability or oversized child: who decides?
Remember back when you looked forward to being an “adult?” There was that feeling of finally getting to stay home alone without a babysitter. And looking forward to when no one could stop you going to any film you wanted…without a parent. Or more important, the day you could buy booze worry free; and the milestone of getting your drivers license. All steps toward the great independence known as being an adult.
I am remembering them because since I have tumbled into disability, different people have been trying to take those cherished badges of adulthood away.
First it was the driver’s license. Tell me, why did I (and my parents) suffer through driving lessons and parallel parking if they can take that away just because I occasionally spontaneously lose consciousness? As I explained; I don’t mind losing consciousness at all. It doesn’t terrify me. ‘They’ explained that the drivers in the oncoming lane felt quite differently.
Then there is my overprotective Recreational Therapist who I assumed was supposed to be helping me to get out into the world a bit more (a bit of adaptive sport, a bit of socialization?). Yet our meetings have the same tone my 7th grade teacher had about why my report of “The wonder of Aluminum” was late ANOTHER day. She wants to know what I have done, when I have done it, and what I intend to do to improve. If I ask her for ideas she says, “I prefer the ideas to come from the client.” Errr...If I have all the ideas, shouldn’t I be the one getting paid? It wasn’t a big problem until I showed up for a Neurological Condition Support Group which was based in the building next to hers. I was talking to the group director when she suddenly appeared and demanded, “What are you doing here?” I smiled and said to the director; “This is my Rec Therapist. She wants me to get out and meet some new people.”
“When you are ready for it.” my Rec. Therapist responded (with the distinct overtones of “When I think you are ready for it.”) before pulling aside the director ‘for a talk.’
Alas, here I thought the group director and I were two adults, able to communicate using both big and medium sized words. I had also thought that giving information gained from medical services to a third party was an invasion of privacy. But maybe that is only for those counted as ‘grown ups.’ I have noticed that some of the people employed by government to ‘help’ the newly disabled sometimes get confused between ‘assisting’ and ‘being in charge of.’ This isn’t the first time someone who was employed to 'assist' me has suddenly turned around and started using phrases like; “I’ll have to think about whether I should allow you to continue.” That phrase would make sense if I was taking a class in laser surgery; but it is insulting when it is about using the public transit system or renting a wheelchair handcycle.
The landlady of my building has recently gotten into the act. Two days ago, she entered my apartment, using the keys to get through the two locks on the door. I was resting on the floor on oxygen and a neighbor was with me. The landlady had seen me enter with difficulty, so she came up to the apartment, decided (without my consultation) my ‘state’ and called my partner’s workplace, telling them to get her home now to “take care of me.” I realized after that she used the same tone ‘adults’ use when they find a child, at home, sat in front of a tub of ice cream, who keeps saying, “No honest, I stay by myself all the time.” An ‘adult’ usually calls up ‘someone’ to come and take charge of this child. To add insult to injury, she later told Linda that she had seen the “state of the bedroom” and essentially I was ordered to ‘clean up my room.’
Now, it is true I have problems breathing (and times when I can’t speak). It is also true that my landlady not only hasn’t asked about my health condition but is slightly phobic of me in general (on the basis that disabled people occasionally explode and cover others with human goo I assume) Yet I pay money for my apartment and I am not just adult sized, I actually am an adult. I don’t need a keeper AND I can speak for myself. Of course, often in restaurants or coffee shops they assume otherwise as they turn to Linda and ignore me; even when I speak directly to them. Sigh. Can’t order my own meal in a restaurant: that makes me about....eight years old doesn’t it?
If this continues it won’t be long before people will assume that by being alone I must be lost and start looking for my name and address pinned to my sweater. I wonder, when I fly, I hope there won’t be a big sign around my neck declaring my ‘unaccompanied’ status; as they amuse me with a colouring set and an airplane wings pin. Not that the colouring set wasn’t pretty cool...when I was nine. It’s just, these days, I order red wine on a plane. I also like to make rude jokes which start off with three nuns entering a bar during a burlesque show.
Just because I need equal access or some assistance doesn’t mean I am a child; as the many, many people who come within range of my sarcasm can attest.
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