Wednesday, November 17, 2010

Being Disabled

In googling for people like me I've come across a lot of great blogs about disability. How people with disabilities (PWDs) are treated, how they live, how they work through the system and how they live their lives without the ease that temporarily-able-bodied people (TABs) have.

I took that ease for granted. I never thought about accessibility. Why would I? I have had very few people in my life who had a chronic illness or a disability, so I had never even considered the perspective. That would be my privilege showing, I suppose. Now I know.

Now I know that the reason PWDs have to sue for access is because usually, no one will fix it otherwise.

Now I know that disability is common and varied, and often invisible.

Now I know what it is to be shamed for having a disability, to feel guilt for it, to feel less than. And I know that it's not right.

Now I know that disabled benefits are really not enough to live on, despite the welfare queen myth.

Now I know what it's like to be hungry.

Now I know what it's like to be pitied, dismissed, marginalized, condescended to, ignored, disbelieved, and misunderstood.

Now I know what it is to be judged.

This knowledge makes me more aware, more sensitive to other marginalized groups, the constant struggle of this life on the other side of able-bodied privilege. Most of us turn a blind eye to it, because (society says) homeless people are lazy, chronic pain patients are all addicts, and people with disabilities who accomplish things are inspirational, and unless you have the life experience, you (I) might not be able to spot the heavy layer of prejudice that coats those phrases. You (I) might even assume that they are true, because a nicely dressed man on television tells you so, and the lady next to him with the doctorate and the cute shoes is nodding emphatically. But homeless people are not inherently lazy, pills do not default to addiction, and accomplished PWDs can be inspiring, sure, but let's not reduce people to Lifetime movies, shall we? (There's a whole bingo card phenomenon which is both hilarious and seriously disturbing.)

Becoming disabled by chronic migraines is one of the worst things that has happened in my life. But also, and I hate to say it for fear of feeding the cliche, it's made me a better person.

Now, the pain... that's had an altogether different affect on my personality. But that'll be another post.


10 comments:

Migrainista said...

Well put.

steph said...

Thanks!

WinnyNinny PooPoo said...

Isn't it a shame when people who need the MOST help are sidelined? The more marginalized you become the harder it is to get the help you need. Something is backwards here!!!

steph said...

Very.

Jessica said...

Oh how this hit close to home! While I am not to the point of referring to myself as disabled...I still stumble through working full-time...my poor father is in a similar situation and I've done all I can think of to help!

My dad had a lucrative career, 3 houses, traveled and was an avid skier. He retired to where I live in Florida 3 years ago. A couple months of being here, he ended up in the hospital having emergency back surgery. He now suffers chronic pain and permanent nerve damage. He is unable to work, has been denied for disability benefits of every kind and unable to even afford his medical treatments. He is living off his savings, however it is quickly dwindling. He has even suggested suicide when his money runs out.

Yet, I have patients on welfare with 20 kids and brand-new mercedes...go fucking figure!!!

steph said...

Jessica,

I'm so sorry to hear about your dad. I hope he's able to reapply or appeal and get a lawyer or a social worker to help him navigate the system. It is too easy to fall through the cracks.

As for your welfare queens, I can tell you for a fact that someone who needs assistance, can not afford to buy themselves a new mercedes. Maybe it was a gift?

Not that I think personal choices are anyone else's business, welfare or no, but if you truly think you are seeing someone abusing the system, please report them. http://www.dss.cahwnet.gov/fraud/pg269.htm

Good luck to you and your dad! I hope he get the help he needs. :)

simplesavvy said...

I think one of the key points of privilege, one that we often forget, is that privilege enables us to think we know a person merely by the way they look. For example, because I am young, thin, white, and able-bodied-LOOKING, other young, thin, white, able-bodied-looking people think they can make fat jokes to me, or racist jokes, or ableist jokes or classist jokes, based merely on the fact that the both of us are young, thin and white, and appear able-bodied.

Jessica, I think one of the things you're missing, despite the fact that you also identify with the disability community, is that you don't know anything about the mercedes-owning woman on welfare's situation besides the outward appearance of 20 kids and a mercedes. That's what privilege does to us. It blinds us to certain things, and lets us judge others.

Even though your dad is in a hard place right now, and you yourself are stumbling through working full-time, try not to think too harshly of the woman on welfare. For all we know, buying the mercedes was the last part of a spending spree before she went bankrupt, or was a gift, or an inheritance, or part of a divorce settlement and now her spouse isn't paying at all, so she had to go on welfare. I don't want to speculate; frankly, it's none of my business. The important thing to remember is that you don't know. None of us do. Admitting that is one of the first ways we can check our privilege.

steph said...

This is a very insightful comment, thanks for speaking up!

Charity said...

I also struggle with chronic head pain and migraines and relate to a lot of what you're saying-- including gaining a new found sense of what it means to experience daily, invisible, marginalizing, dehumanizing disabilities. And what that has taught me about privilege and oppression more broadly.

However, as a fellow migraineur, I have to ask why you choose to make your blog white text on black background.... I'm finding it really hard to read, and while I'd like to keep exploring your site, I don't want to make my headache worse so I'm stopping.

Anyone else have this problem?

steph said...

Hi Charity,

I chose the background and font colors I did because they are the easiest for me to read. I totally understand if my colors give you pain, because I experience the same thing, but with every other color combo! To extend the time I can spend in front of the screen, I've customized my color settings in my browser and my operating system to automatically adapt all webpages to my chosen colors. It's not very hard to figure out, makes the internet immeasurably friendlier, and I describe how to do it here: http://headwisewoman.blogspot.com/2010/08/internetting-with-migraine.html. I hope this helps! :)

--steph