(no subject)

[nilchance]

From September 8th to the 14th is Invisible Illness Awareness Week. I'm going to try to blog daily on the topic of invisible disability, but ironically my fibromyalgia is flaring up, so we'll see what I can do.



I used to be that asshole in the parking lot. I check for the handicapped tag when I pass those parking spots. I used to check not only that the parked cars had one, but that they "deserved" it. If you walked fine, if you didn't have a cane or a service dog or a wheelchair in the backseat, I used to judge the hell out of you. Sometimes I did it quietly. Sometimes it came with pointed remarks about "oh, they sure look disabled, don't they?"

Ahaha. Yeah. The goddess has a sense of humor.

For those of you who don't know, I work in a disability services office. My mom is disabled; she was diagnosed with MS when I was 2. I have fibromyalgia and chronic daily headache with a side of depression. And with all this dubious experience, let me just say: most people with disabilities don't look like it.

I should've known better. Mom didn't use a cane or a chair until I was 15; you couldn't tell that this short firecracker of a woman raged inside with bipolar disorder, that she had bruises under her clothes from injecting herself with a drug to suppress her immune system so it didn't eat her spinal cord, that she had holes in the gray matter of her brain. But it was easy to judge. Disability was the blind man with a white cane, the mentally retarded students my mom worked with, the wheelchair, the flurry of sign language.

Disability is "oh, but you look so good!" It's friends and relatives suggesting vitamins and prayer. It's professors telling you that you just can't hack it and you're wasting their time. It's working through chemotherapy for the health insurance, it's high divorce rates and doctors who police your painkiller usage. It's not that easy, is what I'm trying to say.

The other day, as T and I pulled into the library in a space beside (beside) the handicapped spots, there was a young couple staring at us. While I got out of the car, I heard the woman mutter, disgusted, "oh, they really look disabled."

It's not the body that's disabled. It's our culture, the one that lays out rules about who gets to be "really" disabled. It's the Jerry Lewis telethon that tells us to pity poor cripples and to pay out for a cure, rather than using the money to pay for ramps and health care. It's the myth of the welfare queen and the person bilking SSDI, the expectation that everyone is trying to pull one over, the lack of compassion for each other. That's a real disease, and it's not invisible. You can see it everywhere you go.

Especially in parking lots.

Comments

[sixersfan.livejournal.com]

I think the entire point of the week, and this post, is that none of us really know what another person is actually capable of doing or handling. It's not our place to speculate and judge based on that. Even if we may know five hundred thousand people personally, none of those five hundred thousand has a thing to do with an individual you don't know. And, frankly, you still don't know all about those five hundred thousand people you do know. The details are very important here. The little aches and pains matter. Long term consequences matter (by this I am referring to the effects of having to walk an extra forty feet a day may have on a person's ability to walk at all five years down the road). They are called invisible illnesses for a reason. The sufferers of these illnesses often lack the knowing of what they must endure and what the battles and obstacles are in store for them. We outsiders (outsiders in this case being anyone other than the individual sufferer, and yes, that includes fellow sufferers of the same illness) are in no position to speak to, speculate about, or doubt that person's capabilities and limits, which probably change on a daily basis.

Whether in blanket statements or testimonials based upon specific people you or I may know, any attempt to link the two is a detriment to the entire understanding of the issue.

Generally speaking, I am willing to live with the knowledge that 25-60% of the people who reap the "benefits" of the system are "cheating" if I can also have the knowledge that all those who need the system are benefiting from it.

[idiot4dean.livejournal.com]

Unfortunately I know too many people with both hidden and unhidden disabilities who cannot benefit from the system. I could quote but that would probably be wrong, as my comment seems to have drawn complaint about its content.

[sixersfan.livejournal.com]

I'm sure you do; I think most people do. My issue with you is that your comment seemed to imply that you doubt everyone who doesn't have an obvious disability and special need. You come across to me as looking negatively upon anyone who is benefiting from the system, as if only those who are cheating the system are able to make use of it.

The scope of my discussion was the need for understanding and respect, not the way the system works.

[idiot4dean.livejournal.com]

Actually I don't doubt 'everyone' who doesn't have an obvious disability or special need, but I do know people who use their disability to gain extra attention at the expense of those who have a hidden disability and who complain about those people getting help 'at their expense'.

Recently someone with a 'hidden' disability who I was helping complained that when he went to see a doctor to get DLA the previous person told him to lie about what was wrong with him. He didn't and did get his DLA but was appalled that someone should suggest this to gain the benefit.

I actually believe that it is harder for someone with a hidden disability to access any system because it is more difficult for them to 'show' the controllers of the purse strings how it affects them.

I have great respect for Nilchance and the many other writers here who put themselves on the line to discuss the problems of disability both in their lives and around them. I also have to learn about disabilities in order to help people get the best help they can, is it so wrong to say that not everyone is genuine and that as we respect the ones that are we should feel sorry for the ones who crave the attention that they perceieved is available for those with a disability.

I finish by apologising (because I'm sure someone will pick up on it) if any words used within any of my comments have not been PC, since it changes I may not be following the current terms.