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Adult with disability or oversized child: who decides?

Elizabeth McClung | 07:08 UK time, Friday, 21 September 2007

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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Comments

One of the best examples of this was a wheelchair-using friend of mine who was in a lift (elevator) one day. She pressed the button for the appropriate floor and a stranger turned to her friend and said,

"Is she allowed to press the button?"

Hey, for years I've worked at having people see those with intellectual disabilities as being adults. One of my first books, I Contact: Sexuality and People With Intellectual Disabilities caused such controversy when it came out. Even though I wrote about adults, people talked about the book like I was advocating child sex. Weird. By the by, I'm part way through your book Zed now and loving it. Meow Meow Splat!

Re, the waiters talking to companions thing: as a person born deaf, I have gotten that all my life--and I'm 37. If I'm in a restaurant by myself, waiters seem cool enough; in fact, some have been excellent about using a little sign (maybe only the sign for "thank you" which is usually the first sign waiters want to learn, but it's still appreciated) and even about remembering to get my attention before talking to me or taking the initiative to write to me. But if I'm with hearing companions, then all of that suddenly goes out the window.

The one memorable exception out of these 37 years was an occasion when I was in Costa Rica. I know Spanish, but my hearing American companion did not. I ordered oatmeal for us but used the wrong Spanish word for "hot" (I used "calor" which means "hot" as in a hot day of weather, or hot tap water; I should have used "caliente" which means boiling hot). When the waiter and cook came back to the table for clarification, they immediately came to ME and not my partner. Even though I understood why they wanted me (as the person easiest for them to communicate with ... even though I'm deaf!), I was still absolutely floored because that was then -- and still is now -- the one and only occasion in my 37 years of existence in which I was with a hearing companion but was expected to be the spokesperson for our table!

For a long time, until I started meeting other disabled people outside the deaf community, I assumed that this was a "deaf" thing -- deaf people I knew had the same thing happen to them all the time too. And I assumed it was because waiters were too nervous that I wouldn't understand them or that they wouldn't understand me. Or they were too impatient to take the time to allow the communication process to work. I now know better -- this seems to be an amazingly wide-spread disability phenomon (sp?) in general. Which leaves my old preconceptions about why waiters and other people keep doing this looking woefully inadequate. I suppose paternalism is one possible alternate explanation.

That was totally and utterly unacceptable of your so-called "therapist". Can you sack her and/or report her to her superiors/the relevant authorities?

Surely, legally, there is no way that she has the power to "allow" (or disallow) you to do anything?

You might even be able to sue her (for defamation or something?)

Even if you think it's relatively trivial, if she treats someone as obviously intelligent and articulate as you like that, how is she getting away with treating those who are (superficially) less so?

I suppose i'm lucky in that my disability isn't immediately visually obvious, so i don't (often) get the "child" treatment (i'm more likely to get the "drug addict" or "dangerous nutter/criminal/terrorist" treatment), but i've seen friends with physical impairments get it.

I think every crip who does blatantly "adult" (and/or reckless, dangerous, overtly sexual, etc) things in public is a powerful force for the changing of such perceptions, tho...

  • 5.
  • At 03:22 PM on 21 Sep 2007, Craig Diver wrote:

I understand only too well! Since developing a mental illness people (including family) have treated me as a cross between a naughty child and a half wit(wasn't even allowed to attend my sister's wedding last year in case it was too much for me!!!)

Ah dear I'm so retarded and illeterate I can't believe that I can even READ my university Diploma Certificate! That's why am taking friend advice and framing it on wall!

Oh dear can someone wipe my nose!!!!!

You find people people treat you like a child because of your disability?

Don't worry yourself about it, Lizzy dear (*pats head*). We'll sort it out for you. You just sit down and don't worry yourself about making decisions any more....

(Joking aside, I'm frankly horrified by some of the stories told: it goes to show that if you're not in a minority - myself being a heterosexual 'disability-challenged' white semi-middle-class male in my 30s - you're frequently unaware of how blatant the discrimination and offensive attitudes can be towards that group.)

  • 7.
  • At 03:45 PM on 22 Sep 2007, minichessemouse wrote:

As a sight challenged person i get people touching my elbows when they are talking to me. I tend not to get treated like a child too often unless i have someone with me (on the train for instance) when they will ask my "companion" where i am going. I occasionally get ignored in restaurants especially if someone has to read the menu for me. I am not a child! (although i can pass for 15 when needs be)

  • 8.
  • At 02:38 PM on 23 Sep 2007, Dave Hingsburger wrote:

OK, no one else asked so I will. What's the rest of the nun's joke?

Goldfish: I know it is horrible but I laughed a lot at your example - you said in one sentence what took me 997 words.

Dave Hingsburger: I came to realize the same thing when I watched the unusual film Pumpkin (the mother's reaction to his having porn). I would be curious to your feelings on the film? As to the joke, ask the BBC why they can put out Tipping the velvet with lesbians and sex toys but I can't tell a joke which ends, "It reminds me of that time with you, me and Sister Beverly." Mother Superior: "That was for charity."

Andrea: I can only assume that when people get nervous they turn to what they know; the able bodied huddling together.

Shiva: I think the worst "like a child" treatment is when you are slapped with a mental label and thus ANYTHING you say merely becomes a product of this 'illness' instead of the communication of an individual.

Craig Diver: I cringe at your wedding story, and how people "decide" what others can or cannot handle (usually without say...talking to the person) - I have found when flaunting degrees in some attempt of clawing back adulthood to find them inspected in an insulting manner - hope you have better luck.

Jack P: Well put, what is odd is how accepted these attitudes are in public - if someone was questioned on their ability to be unaccompanied due to skin colour people would be agast (one hopes), while everyone seems to think it is okay since "they were only trying to help"

Minichessemouse: Sigh - it is a good thing you have a telepathic companion with you so they never need speak to you (irony).

  • 10.
  • At 10:50 PM on 27 Sep 2007, james wrote:

arh i get treated like an adult as long as no one see me walk or twitch too much then the voice changes and people become helpful with that arn't you brave out by yourself and doing things (it was complimentary when treated like this when i was a kid about 6-8 (prior to the disability), but now its a tad patronising), people assume you lack the trappings of adulthood work (paid especially), partner, own home, children. I remember having muscle cramps with an asthma attack that made me look like i had CP and a doctor being astounded my partner wasn't aware of what medication i take, and that she was my partner not support worker. I just thought he was being the standard obnoxious out of hours GP till i got to the ward and it dawned on me they thought i had CP as they asked what toileting arrangements i needed.
Also knowing how even very understanding and professional colleagues talk about certain disabilities makes me realise their are certain things that rob your adult status quicker than others.
However as someone else said you should make formal complaint about rec therapist, the Data Protection Act, seems to have been ignored as well as the obvious disability discrimination and codes of proffesional practice.

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