Defining Disability

My parents always taught me that it was rude to talk about money, but I'm going to disobey them just this one time (heh) and talk about how I support myself. It's a subject I rarely if ever talk about, because it brings up a great deal of shame, although it SHOULDN'T. But all of this is interconnected, the shame, the money, and why the two affect each other. So deep breath, here goes.

I am on full disability. I get a government check every month and that's how I live. I live in a property owned by my parents, and I would be on the streets were it not for them. That's how I live. The check is small, but I'm incredibly grateful for it. Before I got my disability, I was on welfare and food stamps. That's the truth. That's how I live.

I realize this could divide some of my readers, the "that's not fair, mooching off the taxpayers, pull yourself together" people and the "wow, I didn't realize things were that bad, that kinda sucks" people. And that's where the shame comes into play. I'm of two minds myself. I know I am disabled, the state knows I'm disabled, the government of the United States knows I am disabled. So why do I feel shame at saying I get that government check every month?

I guess it all has to do with how you see, or don't see, disability. You can't see my sickness. I can walk, and talk, and smile, and PRETEND everything is fine, and I do. You never SEE that I have a chronic illness. It's all safely tucked away in my head, and I've spent the vast majority of my life seeing that it stays there, away from the world, my filthy, dirty secret. That I have a chronic, lifelong mental illness. 

I shouldn't feel this way. no one who has a mental illness should feel this way. The shame comes from my demons, not reality. It's also why I can laugh and joke and live on the outside the "acceptable" way and you would never know, upon meeting me, what's really going on inside my head. My brain is sick, and I'm ashamed of that. Would someone be ashamed of a tumor? Diabetes? A missing limb? Of course not. That would be ridiculous. But I am ashamed that my brain is diseased. 

If I could work, I would. There are days during which I could probably hold a job for eight hours, and there are days, weeks, months on end where leaving the house, or hell, leaving the bed seems impossible. There are days where my inner voices are kind to me, and let me write, or talk on IM or even the phone, and venture to my parents' house or the grocery store. And there are days, weeks, months in which the voices scream and torment and threaten and make things that are not real seem so real, and even though the part of my brain that went to grad school knows that if I drive the car, it doesn't guarantee something terrible will happen, the sick part is more than convinced it will. 

I am disabled. If you saw me on the street, you'd never know. I work very hard to keep it that way. Because part of my disability is my inability to NOT feel shame because I am sick. It doesn't make sense, but neither does a lot that goes on in my head. 

Maybe someday I'll come to peace with my own demons. Maybe I won't. But for now, I am lucky enough that the government looked at my case, spoke with my doctors, and read through the endless reams of paperwork I had to fill out for over a year, and validated my illness. Getting that first disability check, to me, validated my existence as someone with a chronic illness. See? I wasn't just lazy, or stupid, or selfish. I'm a real person with a real illness. I was real.

So that's how I support myself. I am a person living with a disability. And after so many years, it has been acknowledged. And that disability punishes me daily in exchange for that check. I guess, for me, and my twisted logic, it's a fair trade.  

 

Comments

[Cynthia]

I could write a comment longer than your post. I feel you. Boy do I feel you. Misery may not love company but sweet zombie jebus does it make me feel better to know I'm not alone.

[Somedayphd]

You are funny, smart, and most of all brave. Thank you.

[TwoBusy]

It seems all I'm doing these days is coming here, being amazed by your posts, and finding myself unable to say much of anything in response beyond "wow" and "I'm so glad I read that" and "damn, you can write."

And so: here I am again. And wow. And I'm so glad I read that. And damn, you can write.

[Heather]

I'm currently in therapy for an eating disorder, and learned last week that shame is an emotion that evolved to keep us from doing things or revealing things about ourselves that would get us ejected from our group. It used to be about self-preservation.
And I think sometimes it still is. Because you know that there are some people who are reading this who will stop reading you or start criticizing you. And I know that my being overweight means stores have stopped carrying my size, are only selling it online, and I've been ousted from that group of "average" sized women.
The thing is, I don't think I want to be in that group if that's how they treat people. I want to be in your group, where honestly, growth, and just plain cleverness wins out.

[dave]

brave.

[ponytail papers]

Bold. Brave. Bravo. (And what TwoBusy said!)

If people could see the demons physically manifested--the little evil guy walking along beside you all day hissing and shouting at you--no one would ever question mental disease as a disability. It's that real; it's just not that evident.

[Blur_girl]

I'm happy our wonky system takes care of you and you are alive still. I'm sorry it probably does a mostly crap job of it. I'd say more, but my head's clogged with a cold and I've got to work.

[baltimoregal]

Thank you for sharing this. I can't imagine how hard it is to put it out there but I know how helpful you are to others with invisible disabilities. So again, thank you.

[Miss Grace]

Thank you for sharing.

[Dory]

Brava, chica. Honest and introspective and brave.

[Jennie]

What TwoBusy said. To think I spent so much time without your words in my life.

[jaelithe]

I'm a taxpayer and I'm happy to support people with disabilities. Because I like the idea that if I became too injured or too ill to work, there would be a safety net to catch me, too. And because I think a lot of people contribute valuable things to society that can't necessarily be measured in dollars, but some people can only do that if they get a little help from the rest of us.

To me, not helping someone in your position would be akin to not calling the fire department if I saw my neighbor's house was burning down. I certainly wouldn't expect my neighbor to be ashamed that I called the fire department while his house was burning, would I? People can call me a filthy communist for having this point of view (and believe me, they do, on a regular basis, over at the political blog I write for) but I truly believe that helping fellow citizens when they are in need is a fundamental American value. The first European settlers here would never have survived if they had not been willing to build homes for the homeless, share food with the hungry and care for the sick. If I were to refuse to do those things myself I would honestly feel I was mocking their legacy.

So it doesn't bother me that a hundredth of a penny of my Federal tax payments this year may have gone to pay your rent. And I don't think any less of you for having needed that hundredth of a penny more than I did.

[Rossruns]

I have nothing but respect and admiration for you for being able to deal as well as you do with your "invisible" disability. Doubly glad that you and others like you (including some close family and friends of mine) are rightfully diagnosed as having a chronic illness that affects every facet of your life, and are supported when you can't quite support yourself because of it. You are very brave for writing this post and I am very appreciative that you decided to share this with the rest of us.

[miconian]

'I realize this could divide some of my readers, the "that's not fair, mooching off the taxpayers, pull yourself together" people and the "wow, I didn't realize things were that bad, that kinda sucks" people."'

I'm an "I understand, life is hard and we're all dealing with it as best we can" kind of person.

[Snarky Amber]

Ladies and jellyspoons, this woman is my best friend, and she is awesome and brave and v. v. pretty. That's all I have to say.

[Erin G]

Here's something: you DO have a job. I used to be a little hard-hearted, but I've read your blog for a year now and I follow you on Twitter. I don't have any experience with mental illness except thru you. I have grown to care about your ups and downs and I can see so much better now than I did before that's it's a day to day thing and as frustrating for you as it might appear to a tax payer. Sharing your life with your readers - so some will be comforted and some will develope compassion - is a job. :) Thanks, Miss Banshee.

[maritzia]

*shrugs* I just assumed you were on disability. I know a number of folks on disability due to a mental illness, and having a moderately disabling illness myself, I have nothing against folks who need disability payments to live. What I do think, though, is that disability payments should be more than they are. It's a shame that people have to live in abject poverty because they're disabled. You're very lucky to have parents who can assist you. I know a number of folks who live in absolutely desperate circumstances because their disability payments aren't enough to cover rent, food *and* medications.

So, yeah, no judgment here. I think you deal with your disability quite well, and there's nothing for you to be ashamed of.

[Edie]

I've had blogs on and off for around 12 years now and I've always wanted to write about my living situation but haven't because it embarrasses me. I really admire you for having the courage to do it and I think you're even awesomer than I did before :o)

[angela]

I lurk, but this made me come out of hiding. I have some invisible illnesses (mental and physical) that I find it very hard to talk about even among the people closest to me, much less online. I've internalized a lot of judgmental nonsense about mental illnesses (and invisible physical ones, too!) really just being selfishness/laziness/whathaveyou, and turned it into shame... which really just contributes to the problems I'm already dealing with. I wish the world was more compassionate and outspokenly supportive.

So I thought I would come by and say that I think you're an awesome writer, and also that I think it's the collective responsibility of people in a society to make sure that at least the basic needs of every member of that society are met, without question, no matter what, period. You shouldn't ever have to justify to anyone how you make ends meet, but I am glad that you posted this, because though you didn't owe it to anyone, I bet it helped a lot of people. It helped me.

[kdiddy]

My son and I received federally-funded care for the first few years of his life. It actually made me proud of the U.S. that such a program existed. Without it, we would have died. No exaggeration. I am happy now to pay back into that system so that other people can take care of their health. It almost makes up for all of the other things that my taxes pay for that I would rather not. If only we could help MORE, you know? Hardcore capitalists can hate on people like you and me all they want, but the whole point of a society is that we look out for each other and help each other out when times are tough.

[Maria]

You are beautiful.

And so, so brave.

[Kendra]

It's sad that as a society we shame people who can't work, for whatever reason it may be. I am very happy to give whatever tiny percentage of my pay check that goes to help yo because at this moment in my life I can work. "There but for the grace of God, go I" I say.

[VDog]

What Maria said.

Big smoochies to you, love.

[thepsychobabble]

I don't usually admit it, but the last year or so, with both of us unemployed?
Yeah, *had* to apply for Food stamps. Wouldn't have survived without 'em.
I'm not super proud we're in that situation, but I keep reminding myself that it's there to help in times of need, and eventually we'll be able to contribute to the program again, instead of take from it.

I think there is something in most of us that dislikes reaching out for help. Human nature and all.

[maggie, dammit]

Good for you for speaking out, girl. Human voices + truth telling = humanity.

xo