Special needs, cures, and the rest of it…

So. There’s been a lot of talk in the special needs world recently about the potential new cure for Down Syndrome. And a lot of parents are saying they don’t want a cure, because their child’s disability is such a large part of who they are that, were they to be cured, they would no longer be the same person. I kinda get that, but:

At the same time, they ask us not to define their children by their disabilities. To use person-first language. So why are they allowed to define them thus? There are even those who claim that the very search for a cure is “ableist”… But aren’t there a host of medical problems associated with Down Syndrome? Isn’t the average life expectancy shorter? Doesn’t it make life more difficult in many ways – even excluding all the difficulties that could be ameliorated by a more inclusive / accepting society?

And, speaking of society, is it completely wrong to consider the greater good? (The debate over the desirability of a cure has spread beyond Down syndrome.) What I mean is, people with special need carry a cost. A medical cost, an educational cost, an assisted living cost (as the majority can never become independent). I don’t begrudge them this cost, but we do not live in a society of infinite resources: every dime spent on people with special needs is taken from elsewhere.

As I said before, I don’t begrudge them this cost. Anything else would mean living in a society where it is acceptable to class people as “less than human”. Historically, this has always led to atrocities of the worst kind. However, if some of the expense could be avoided by a cure, which, at the same time giving people what, to my mind, seems like a better quality of life, isn’t it wrong to avoid it, nay, even to fight it, because it threatens one’s sense of identity?

Of course, this is a very tricky question when talking about people who have been living with their disability for years. Of course it has shaped them and influenced who they are to a large extent. Of course the thought of such a large change would be intimidating and distasteful to some. I mean, my sister refuses to have her extreme myopia corrected by laser surgery, because it would completely change the way she experiences the world, and because it threatens her sense of identity. But when we are talking about very young children, or babies yet to be born, does this – should this – still hold true? Would the people who do not desire a cure for themselves wish their fate on other people?

In some cases, it seems to me this has more to do with the parents’ – primarily the mothers’ – identity as Special Needs Parents. A breed above the rest, unsung heroes fighting adversity in an unfair world. Again, this is something I can understand, but is it fair to the child?

I have read of several young adults with Down Syndrome wishing it away. Of course, a large part of it has to do with the way society treats them, makes them feel that being different is a bad thing, ridicules and excludes them. At the same time, another part of it is them themselves seeing and resenting their limitations, seeing and resenting how much more difficult and frustrating even the most simple tasks can be.

My other sister has Asperger’s (or, as she puts it, she’s an Aspie). This has shaped who she is to a large extent. Do I wish her cured? No, I, too, am scared that a cure would turn her into a person I don’t recognize. Do I wish she had been “cured” as an infant? Well, it probably would have avoided years of misery and a suicide attempt, so yes. Definitely yes.

Parking insanity

So, across the street from where I work lives a family with an adult handicapped daughter. I suspect she has Cerebral Palsy, but they kind of keep her hidden away, so I’ve never met her. Oh, and they don’t really talk about her, except to wish her fate on unborn children of people who annoy them – and they are easily annoyed. (It was bad enough when they did it to me, but saying “I hope your child ends up like my daughter” to a woman in her last trimester just isn’t cool in my book).

Anyway, it’s pretty obvious from the above that I don’t really like these people (the parents, that is. Obviously, I have no issue with the daughter, as I haven’t met her)

*By the way, this is more of a rant than a dilemma*

These people have a disabled parking space for their van in front of their apartment building. This is an absolute necessity, as there is a parking problem in the area, and I completely respect that. Except… One day, I was running a little late for work, and I parked in the space in front of theirs. Being somewhat preoccupied, I didn’t notice that my rear bumper had passed their “no parking” sign by about two inches. It is important to note that their car was already parked in their spot and I wasn’t blocking it in any way, nor was I impeding access to any doors or ramps. So, this woman who I had never met before starts screaming at me, swearing at me, cursing my unborn children and insisting that I move my car.

*Please bear in mind that, if she had just come up to me and politely pointed out my error and asked me to move my car, I would have done so willingly and gladly, and apologized . And, by the way, I moved it anyway, but I did ask her to be more polite in the future.*

So, childishly, ever since then, whenever I find that parking spot, I try to park as close as possible to the sign without actually passing it.

…..

These people also have a second car, just a normal car, that they also park in front of their building. They rarely move it, so it’s usually in the same spot – a tight spot between the neighbors’ garage entrance and their own wheelchair ramp. This is not a designated spot, so it happens that sometimes, while they’re gone, someone else will park there. Generally, people are very careful not to block the ramp – I mean, you see a handicapped parking space and a wheelchair ramp, you’d have to be a major @ss to block it, right? – but these guys get really ticked off when anybody parks there.

So, I get to work today and notice that the city has painted a huge yellow square around the ramp, extending about a foot and a half past it on the side where they park their normal car. Neighborhood gossip is that they demanded that the city do this, ostensibly to protect access to their ramp, but really to make the space between the yellow square and the neighbors’ garage entrance too small for a car to fit. Mean-spirited gossip you might say. But their second car was parked right over half of this square, and about half a foot of their ramp!

Oh, by the way, this girl’s disabilities (again, according to the neighbors) are strictly physical. I can’t imagine how she must feel hearing her mother use her as a curse, like hers is the worst fate you could wish on someone…

Superheroes and Sidekicks

So, a lot of bloggers who have special needs children refer to them as “Superheroes”. I get that, I think. They are trying to express how hard their children have to work to do many things most parents take for granted. Having said that, it does sound as if their children are better than “normal” ones. That somehow, being disabled makes them worth more: more time, more attention, more money, favourable discrimination somehow. But where does this leave their normally-developing children? 

Some of these mommies don’t write too much about them. They tend to mention them in passing, usually in relation to their special “superhero” child. They post “interviews” with them, where nearly every question is about their sibling. Some of them do devote as  much space to them and seem to balance their attention a little. But something I came across recently really incensed me. 

She called her other child a sidekick. A sidekick! A SIDEKICK!!! 

The superhero and the sidekick. The main star and the one delegated to a supporting role. Nowhere near as important. 

A sidekick. Just because he doesn’t have to try so hard for everything. Worth less.

Listen lady, being the NT sibling of a SN child is not easy. They usually get less attention from their parents, their achievements are often glossed over while their sibling is praised for every.little.thing. They often feel the burden of their parents’ expectation to take care of their sibling when the parents die. No matter how much we might wish it otherwise, they have to deal with discrimination from their peers – friends often don’t want to come to their house to play, parents often won’t let them form friendships with peers that refuse to include the SN sibling… tip of the iceberg. And many of them have trouble finding life partners willing to carry the burden of the superhero sibling.

*Sigh*

Sidekicks…

These kids are just as entitled to be called superheroes as their special siblings…

Resources

I had watched a lecture a while ago – so long ago that I don’t remember the details – where the following ethical dilemma was posed:

Person A can take an action which would benefit many people, but in doing so, person B would be unfairly harmed. Under what circumstances would it be morally just for Person A to violate Person B’s rights in order to benefit the group?

This is a question I’ve been struggling with as far as the allocation of common resources (like tax money). Here in Greece, they are cutting back on disability allowances. With the current financial situation, it’s either that or put an even heavier burden on an already overburdened tax base – or reduce funding even further for sectors like public health and educations.

How can we weigh the needs of one against those of an other? How do we calculate the best interest of society?

 

The case against banning the word ‘retard’

Wow. Just wow. This article from the archives of the Washington Post expresses exactly what I was trying to say in my previous post. Only so much more eloquently. Even the poll is so much better!

http://www.washingtonpost.com/wp-dyn/content/article/2010/02/11/AR2010021103896.html?sid=ST2010021403772

Words

I’ve been reading a lot about banning the word “retarded” lately. Some of the SN-mom blogs host some very militant posts about the issue, and some of them have attracted some very venomous comments. A couple have even impelled me to leave a comment, going so far as to compose lengthy replies, which, however, I never published.

think I understand the issue with this word, but I’m not sure, and I’m not sure which side I’m on.

I mean, first of all, I’m definitely against banning the word – I’m against banning any word, period. If a word gets banned, literally, you’re only one step away from burning books and putting people to jail for expressing their ideas. Do I agree with some of the ways the word is being used? Not really. I’m not for insulting people in general. But banning the offensive words is definitely not the solution. Secondly, why focus exclusively on people with intellectual disabilities (I DO hate this word, is it still OK to use handicapped?)? What about deaf, dumb, blind, lame people? Should all those word be banned as well?

Moreover, why focus on “retarded” specifically? Is “idiot” any better? Or “moron”, or “imbecile”?

From Wikipedia, the free encyclopedia:

Imbecile was a medical term used to describe a person with moderate to severe mental retardation, as well as for a type of criminal.[1][2] It arises from the Latin word imbecillus, meaning weak, or weak-minded. “Imbecile” was once applied to people with an IQ of 26–50, between “moron” (IQ of 51–70) and “idiot” (IQ of 0–25).

The word,  on and of its own isn’t really offensive – it means delayed, slowed. Like fire retardant fabric. Disabled sounds a lot worse in my ears. It means “incapacitate”, “maimed”, “disqualified”. Is that really better?

Even if the campaign to have the word eradicated were temporarily successful, any word used to diagnose people with mental retardation would eventually become a derogatory term. I have an acquaintance who uses the word “special” in the same way – usually pronounced thpethul and with the accompanying idiotic *whoops, see I just did the same thing with an older word without meaning to, but how else can I express this? Asinine maybe… * look on his face.

I don’t claim to have a solution here – I’m not even sure exactly where I stand on this matter – but I know “banning” the word, either literally or in a “it’s not P.C” way is definitely not the answer.

-Footnote: I suffer from mild / moderate hearing loss and very frequently I have to ask people to repeat themselves. Several times they’ve asked me “What, are you deaf or something?”. It doesn’t offend me, I just reply that yes, I’m a little hard of hearing. It saves me the trouble of having to volunteer the information.-

Hello world!

I’ve been reading a lot of blogs recently and wanting to leave comments. The things I want to say, however, usually end up being as long as the actual blog post. As I think this would be rude, I don’t post them. So I decided to start my own blog to express my thoughts…

Follow

Get every new post delivered to your Inbox.