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.  



Defining Disability — 76 Comments

  1. 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.

  2. 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.

  3. 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.

  4. 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.

  5. 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.

  6. 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.

  7. 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.

  8. ‘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.

  9. 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. πŸ™‚ Thanks, Miss Banshee.

  10. *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.

  11. 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)

  12. 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.

  13. 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.

  14. 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.

  15. 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.

  16. So this is complicated…
    I am glad that you are able to get the assistance you need to help you get along in life.
    I suffer from chronic depression and after a suicide attempt last year (not the first), had to pull it together to get my life back on track.
    I never applied for assistance and unfortunately my parents don’t own any properties that I can inhabbit.
    It’s great that you had the balls to out yourself to your readership the way you did.
    I hope that assistance is there if my condition ever gets to the point where I can’t function daily.
    I hope you find yourself able to one day function independently despite your illness.

  17. Thank you for this. I’m in the same boat, and I feel such shame, but I realize I shouldn’t.. but that doesn’t stop it. And that’s so wrong, but it’s what our system does to us and yells BOOTSTRAPS at the top of their lungs when for some people like us.. it just isn’t possible even though we wish we could.

  18. Hugs to you. And plus, kudos to *anyone* who has the wherewithal to put on makeup even when they stay at home. Yer so pretty! When I stay home, I stay ugly and feel ugly too.
    P.S. Even though you apologized numerous times for not being “funny”… you still possess wit, which is way better than funny IMHO.

  19. I’m mostly just a lurker here but I love your writing. I had to comment on this post because I’m currently in grad school for social work so these issues are near and dear to my heart. Thank you for sharing this with all of us, and you are doing a great service.
    My thought when reading that so many seemingly ‘normal’ people rely on public assistance and are ashamed to admit it is that I wish they would step up and be honest like you have. I think one reason social welfare programs are so widely criticized is that many people think they’re only for lazy people refusing to work. If those critics understood that a wide variety of people have had to rely on public aid, they might realize that the system is in place to help *everyone,* and for all they know they may one day need it.

  20. I have a another friend in my computer who has some unspecified emotional issues which qualify her for disability. While she is mostly a lovely, cheerful person, many things can send her into a dark place with the accompanying hysterics.
    She looks at her disability check as a government grant that saves other people and employers from her particular brand of mental illness. Not a bad way to see it.
    I’m glad you write things to entertain me. You make me smile.

  21. This is the first time I’ve ever read your blog, I stumbled upon this entry from a retweet.
    Thank you for sharing your struggle. I also applied for disability for my mental illness, but was denied. I did not get that validation you spoke of.
    I feel a lot of what you described about some good days and some bad days. I feel guilty when I have the good days and somehow like I deserve the bad ones.
    At least my husband did get approved for disability for his, also invisible, mental illness.
    Again, thank you.

  22. You could tell me that you’re the Queen of England or writing this from the nearest coffee shop to where your cardboard box is. I don’t care because I love you no matter what.
    Okay. I do care. A lot. About you. While your admisslon is brave and inspiring it hasn’t changed the fact that I am so happy to have you in my life.

  23. I’m a taxpayer, and I am proud and happy to support you in my tiny little small insignificant way. You are a person. You have a disability. You have the right to live, and my only regret is that the check is too small for most people to live on comfortably.
    Conservatives can suck on this, but Karl Marx, frankly, wasn’t that far off from my beliefs in this area. I am able. You have a need.

  24. I am a Canadian who is on disability for mental illness and it is comforting to know that there are others out there who feel as I do. I don’t want to have to feel worse for utilizing a system that is designed for people who truly need it. I am not lazy. I don’t sit on my ass all day eating processed food and watch reality t.v. all day. I am woman with a mental illness who is trying to get better and had to turn to the government while I do so.
    Thank you for having the courage to talk about this.

  25. I linked to this from Ebert’s Tweet and have to agree with the other commentors. There but for the grace of God goes any of us. I have a beloved cousin who is schizophrenic and my heart breaks for her. I am more than grateful that our society does what it can to take care of her and you.

  26. found you from @theBitchinWife RT
    I know nothing of you but for this post – shame is a tricky thing and when you’re sometimes trying to find reality it makes it even harder to conquer. Be proud for putting this out there. Do we need the welfare system? Yes. Is it flawed? Yes. Do people abuse the system? Yes. But don’t let the world at large lump you in with the rest, don’t let the shameful behavior of others hurt you, you’re hurting enough. Take care.

  27. I am bipolar and on disability also. I feel everything you do and have felt shame about my disability status. I don’t feel like I am mooching, after all I did pay into the fund in case I am disabled, but it does not mitigate the shame I sometimes feel. Hats off to you. This blog entry was brave.

  28. I am also in the invisible disability club. We are forgotten, there are no ribbons or bracelets for us. Tho a friend in same boat suggested we have INVISIBLE bracelets and should sell them online.

  29. This is the first one of your blogs I’ve ever read, and I can’t imagine how it could possibly cause you to lose any readers… Silly Banshee lady, you’ve just GAINED one!
    I’m going to follow you on twitter too (don’t block me, I use it to read, not to write. So it looks like a bot!) and I’ll be reading your library of former blogs with eager eyes!

  30. I hope your bravery helps even one person recognize that there is/should be no shame involved in living with dignity with a chronic illness, in surviving rather than dying, in taking care of yourself rather than living in denial, in sharing your wisdom rather than hiding from the world. There are many of us who walk around with our invisible demons, and it helps so much to know we are not alone. If more people knew they could get help, fewer would have to suffer.

  31. I read this a few hours ago and had to wait to reply to your heartfelt post as I couldn’t see through my blurry eyes . I work as a part time cashier here in a large store only in the South(bet ya can guess) and YOUHAVE NO REASON TO BE ASHAMED!!! I see people every day using WIC, EBT(food stamps) who are screwing our system. Trust me, it fucking pisses me off to see somebody buying birthday cakes, junk food, lobsters etc and using food stamps to pay for it when they are too lazy to work( and yes, I have heard them tell their friends as such). You are disabled so you deserve everything you can get .our system is for those if us who need it and you had to jump through hoops to get it I bet. Do not let this shame you in any way as you have worked before and paid into the system . I myself had to get food stamps shen we lost everything and without them and a local food bank my kids wouldn’t have anything to eat . I sm so proud of you for sharing your truth and letting us old time readers know a little more about Badass Miss Banshee!! Hold your head high and know even though you feel alone, your readers are with you 24/7 cheering you on

  32. I found your post via Twitter and it hits VERY close to home for me.
    There is a difference between someone who has a mental illness and has to live with that for the rest of their lives being on disability (and SSI, depending on how long they’ve worked before being disabled) and people mooching off the system. I have more than respect for someone who’s mentally ill and living life the best way they can and don’t mind my tax dollars going to help them survive. Trust me, I have had to walk a mile in your shoes (vicariously though a family member) and to see someone deteriorate in front of your eyes is a VERY scary thing.
    Please don’t be ashamed – there needs to be more awareness and assistance for the mentally ill (all degrees of mental illness, not just the “serious ones”) and less stigma around it.
    Take care of yourself. πŸ™‚

  33. You seem to be a beautiful person, regardless of your condition. πŸ™‚ And evidently Roger Ebert thinks so too. I was linked this from his Twitter page, which is sort of fun and interesting. I think I’ll read what you write more often, when I have time.

  34. I think you are an extremely brave and brilliant woman. There is not much more that I can say other than YOU are beautiful. I kind of alluded to the shame you speak of in my last post…but certainly no where near as eloquently and as raw as you have.
    Keep on it!

  35. You are so brave not only to speak out, but to be able to face your illness head on and fight it every day. Both my parents have been diagnosed with bipolar disorder. One has been treated (successfully, for many years) and the other refuses treatment, and you can imagine the difference in our relationships. I can see (as an outsider, of course) how difficult it is to admit to yourself, much less the rest of the world, that you’re going through this. I’ve always thought you were funny as hell, but now you’re one of my heroes. Thank you.

  36. Thank you for your honesty. My best friend lives with the same demons and is also on disability. I watch him struggle and yet for all his pain survive. I see you the same way. The battles are many, and there are days they are more than you can bear. Yet here you are, sharing with us. Making us laugh, and helping in ways you may never fully realize. Thank you for being so open and honest. It helps us with those “invisible” disabilities and those we love to feel so much less alone.

  37. To the new bravest woman I know. Thank you for speaking out. For speaking out on behalf of those with mental illness, I thank you. For speaking out on behalf of those who must live on a disability income, I thank you. For speaking out on behalf of those who may not have the voice to do so, I thank you.

  38. I’m glad you said that. While my husband and I have been in school, we’ve received food assistance (I hate the term ‘food stamps’) and without it, we and our boys would have went hungry. I’m thankful that we had that help.

  39. Would someone be ashamed of a tumor? Diabetes? A missing limb? Of course not.
    Sadly, yes, especially people whose disease is “their own fault” or makes them fat, damages their appearance or otherwise makes us look less than the perfect, smiling disability saint.
    Good on you for accessing the very small benefits of a supposedly civilised society. I live in Australia, where the system is slightly more generous, and even so it was hard to admit I was sick and needed help, because the idea of a totally independent person is so ingrained in us. The reality, of course, is that none of us are totally independent, no matter how rich or poor, well or sick, and a healthy society should be comfortable with that.

  40. Thank you. I hate admitting to living on disability far more than I mind telling them about my mental illness itself. I never know how to answer the question that’s so simple for most people, even the currently unemployed people from the workforce: “What do you do for a living?” Some people tell me they don’t mind paying for it through their taxes because it is veterans’ disability and I served my country. What about all the disabled people who didn’t? Are they expected to fend for themselves?

  41. Thank you for posting this. I have major depressive disorder, which makes simple things difficult sometimes, and I get so frustrated with myself that I can’t do things that I KNOW I should be able to do. I feel guilty. I feel like I’m lazy. I feel ashamed. I guess I’m still learning to accept that my brain doesn’t work like everyone else’s.

  42. I read your blog article on disability and mental illness. I’m a mother of a 13 year old boy who suffers from Schizoaffective Disorder. Each and every day is a struggle toward well being. I receive disability each month for him, not nearly enough to live on, but it helps greatly. I have never been ashamed of telling people about it, and you stepping forward and telling your story is a step closer to getting the world to understand that mental illness isn’t just some silly little head trip. Best of luck πŸ™‚

  43. This is Autumn Sandeen of the blog Pam’s House Blend, I can be reached at autumn [at] phblend [dot] net.
    I’m also mentally disabled; my good fortune though is that I’m a retired, disabled US Navy Veteran (disability is service conected), so my government checks are larger.
    May I have your permission to crosspost your blog entry to Pam’s House Blend? Thank you for your consideration.

  44. “Would someone be ashamed of a tumor? Diabetes? A missing limb? Of course not. That would be ridiculous.”
    Speaking as someone with a missing limb and chronic depression, I have to say that I feel ashamed about both problems. It took me a very long time to get used to being stared at. I still deal with self loathing. Some days are better than others. On the other hand (A joke for those who know me…), I generally don’t feel ashamed about recieving disability checks. It has really helped, I would not be where I am now without them.
    Something to think about.

  45. Thank you for articulating (beautifully) a syndrome most people cannot comprehend and, therefore, have no understanding or compassion. As for government assistance? My mama used to say, “What’s the point of government if not to take care of it’s citizens?”

  46. Meh. I knew you were a nutter just like me when I met you for the first time. It only made me love you more.
    I’m not on disability. I am lucky I have a husband who can and does provide for me and my children. There isn’t a moment that doesn’t go by that I’m thankful he loves me enough to put up with my disease.
    I applaude your bravery and only wish I had your courage. Mental disability or not, you are my hero for posting this.

  47. Oh, wow. It’s rare that I read the words of another, and recognize my struggles in theirs. I’ve been in a battle to win disability benefits for almost a year now, with no end in sight. My anger and shame at even *having* to fight this battle haunts me daily. Thank you for your words and for your bravery.

  48. Your honesty makes the rest of us experience community. I hope our support pulls you inward, even a little. My husband is on disability for similar reasons as you. It has been equally validating and freeing; even while some others have been less than, er, “supportive”.

  49. You are incredibly brave to talk about this. My mom has schizophrenia and I know what a struggle mental illness can be, almost made worse because there is no visible manifestation.
    Keep writing this awesome blog. And please take care of yourself. Clearly you touch a lot of people. Me included.

  50. thanks for being so open on here. i am dealing with depression (have been for almost 10 years) and for a few years i was unable to work, but i am fighting back and getting on top of it now I believe. going back to work has been a big part of that for me. i don’t know the ins and outs of your condition, but i would encourage you to try to do some type of work, even if it’s voluntary, part time, or very menial. the reason is not money at all, but the feeling of independence and also getting out of the house and being part of society. (i hardly left the house for weeks on end during my depression.) perhaps there are employers who are sympathetic to your condition and able to help. you never know. in the meantime, stay strong!

  51. My best friend gave me a link to this post and I’ve spent a good chunk of my afternoon reading your blog. But this post… it pretty much said what I’ve wanted to say about myself but couldn’t articulate. I am currently in a serious holding pattern waiting for my appeals hearing for disability. I am pretty open about it with my close friends but I sugarcoat or elude the subject when it comes to people I don’t know. Why?? I guess because, like you said, you can’t see my disability. (Well, my husband and sister and mother and several other close family members have seen and DO SEE it all the time; but the rest of the world is totally oblivious.) When I have opened up about it I have been made to feel like a complete loser. (Because, yeah, I totally LOVE the fact that I am $80k or more in debt from student loans and don’t have a degree to show for it. And even if I did have the degree I wouldn’t be able to put it to good use.)
    Anyway, that was probably pretty ramble-tastic. But I wanted to thank you for saying what I want to but can’t seem to find the right words to say. (Once I almost said it would be easier — in a ‘people will understand and be less judgmental way — to have a physical/outward disability; but I held my tongue because I just knew it would come out all wrong.)

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