Thoughts of an Aspie: What it Feels like to be Disabled

by Melissa K. Vassar-Belloso

What it Feels like to be Disabled

By Melissa K. Vassar-Belloso

I’ve been  going through hard times lately….very hard times and I haven’t done one of these posts in a while so I figured it was a good time. I don’t think it really matters because most of the time my words mean zilch to people anyways and they’re just trying to pretend I don’t exist. It would probably be pretty damn awesome if that were the truth at this point.

Since I lost my job in September I’ve come to the grim realization that I am just not equipped to be successful at most traditional work. Sure, I might want to do it and I might be able to temporarily pull it off but I will never get promoted,never be gainfully employed and eventually any employer unlucky enough to be stuck with me will find a way to get rid of me like my last job did. This is just my reality and it’s one I’m slowly sinking into deep depression accepting. But at the end of the day that’s inconsequential. It makes other people unhappy when I talk about my problems,especially my family, so I’ve developed the harmful habit of basically internalizing every damn feeling that stirs that my little damaged heart. People say they care but really they just want to sound like good people. They don’t really care about my problems,accept me for who I am or have any interest in getting deeply involved with me or my horrible problematic existence.

For years I’ve waffled with suicidal ideation and just hung by a thread because internalizing everything just poisons me inside but if I dare speak about that pain even a little I get lambasted and shamed. I mean what nerve do I have to bother other people with my problems and expect understanding. I think the worst part is that the people closest to me are usually the ones most guilty of this. Anytime I show any sign of not being okay or advocating for myself I am very quickly shut down by my family. My husband to his credit would probably take a bullet for me and he’s awesome but when your actual blood related family can’t do that even that is very little consolation. I’m always afraid to say anything but you know what? My family makes me feel like dirt! 

And yes, you can think I’m a horrible person twenty ways to Sunday but whether it’s intentional or not my family makes me feel like the worst shit stain on the planet when I decide to speak up about how I feel. I’m expected to always acknowledge their feelings but if I make the tiniest peep about mine you would think another World War was about to start. I don’t think they do it on purpose though. I’m sure in general people mean well and really do want to help but when actual feelings start coming out it gets too intense for them. Naturally, the first reaction is to shut the water off before the room floods.  Now I do occasionally wonder when it escalates to how horrible I am or how much I apparently expect people to accomodate me. This is kind of a normal misconception though. Most non-disabled people assume disabled people want special treatment so even if I don’t ask for anything I get accused of it because people just jump to that obviously super common fact (and definitely not speculation) about a disabled person.

Let me explain this a little more though. You know how non-disabled people eat,sleep,and have feelings. You like being listened to when you have problems,yeah? Maybe you even sometimes have justified feelings like being angry when someone insults you or being sad when someone hurts your feelings. This might surprise you but disabled people work the same way. Unfortunately, instead of this working for me I get assumptions and shame when I express feelings. I’ve basically just developed internalizing and sealing away everything then slowly working through each thing and invalidating it to the point I’ve made myself feel horrible even more because I’m clearly a horrible person who doesn’t deserve feelings.

Most of the people around me are very quick to tell me how I want special treatment  and they have  to “walk on eggshells” around me. That’s really never been the case. I’ve never felt the courage or self worth to do those things but if I point that out I’m not surprisingly wrong again. Having a disabled person in the house is basically just having a scapegoat in my family so it’s a lot easier to just pretend my feelings don’t matter.

Invalidation breaks a person. That’s not an opinion.It’s a fact. Repeated invalidation over a length of time causes psychological effects on a person. It lowers their self-esteem,creates patterns of negative self-talk and eventually makes them curl up so far into themselves they’ve basically died inside and can’t be fixed. At some point you’re just going through the motions and waiting to die and after a while of that you just really want to die. I go to bed every single night hoping my heart just stops while I’m sleeping and I don’t have to get up the next morning. There is absolutely no point or benefit to me waking up in the morning and I absolutely believe that. In fact most mornings I sit there and mentally tell myself how worthless I am and how pointless it is I’m breathing. But since I get jumped on every time I express feelings I just tell everyone I’m fine. It’s easier that way. It’s safer that way.

But sometimes it hurts. All the internalizing and dismissing can’t make it hurt less that my family seems to only want me to exist when I’m not bothering them with my pesky feelings. Every once in a while I screw up and I’m accidentally honest about my feelings and I just get yelled at. That’s when I realize how truly pointless me even being alive is. And you might think that’s kind of petty but not having healthy family relationships has grossly translated to relationships with other people being impossible. I don’t trust anyone enough to make friends and I’m too paranoid to trust my husband completely because I have it painted in my head men are supposed to be verbally abusive after this length of time. But somehow if I bring anything at all up about anyone at all in the family being at fault it always ends up being something wrong with me in the end.

In a strange way I expect other people to treat me like dirt but my family doing it has never reconciled well mentally. It’s hurtful and confusing. I’ve gotten over wanting a TV family. I just want a family that doesn’t smack me like a bad dog every time I express a sign of being human. Is it just easier for people to put a disabled person at a subhuman level? Like maybe if you put me at that level you don’t have to deal with reality. I really can’t be sure about that completely but it makes more sense than the alternatives.

But I guess that’s a ramble that exists now. I can’t really help it I guess. It’s not something I can do around family and sometimes the stuff just needs to comes out. I’m still human and I still need at least the illusion I’m being listened to sometimes.

Again, I don’t think it matters too much because no one really listens to me and my opinions and feelings have no value. That’s the one thing I’ve learned while being alive. I’m never sure about much else but I know 200% that I’m worthless and so are my feelings and opinions.

I think part of the problem is that after internalizing a while I kind of get overloaded and start to shut down. I’m definitely getting to that point lately. Between the stress of possible legal steps with my last job,the weight of knowing I’m unfit to work after years of trying,and the prison of being in a home where I’m scolded for expressing my feelings I think I’m literally imploding and dying inside. On top of everything I now have no medical coverage,no foreseeable income and the added on sprinkles to the sundae of having to fight for SSDI and prove I’m disabled. I absolutely hate that we have a disability system that the main criteria is basically intelligence. Think I’m wrong? Let me explain the processes to you.

First you fill out an online application listing your disabilities,doctors,medications etc. It’s extremely general. You fill out some more garbage forms after that,one of which is a repeat of one from the online application. In my case you then lose one of those forms that I spent about 2 hours filling out and never confirm if you found it. I guess that’s how government efficiency works these days. Next you do a “psychiatric” examination. Don’t be fooled. Their idea of psychiatric is just a series of logic tests. It’s measuring reasoning and intelligence. Not once were any questions relevant to my conditions brought up but I knew I’d get deemed “competent”. Factoring all that together gives you a system confusing intelligence with competency. They are not brothers in arms every time. Just because I’m intelligent doesn’t mean I’m not significantly disabled. Intelligence won’t make my body be in less pain. Intelligence won’t make up for my constant social anxiety. Intelligence won’t rewire my brain so lights and noises don’t cause sensory overload. Intelligence is arbitrary and won’t make me magically fit into a mold of being able to maintain most traditional jobs. I’d still be lacking in a plethora of other skills I needed to do that.

Am I nitpicking the system? Yes. But here’s the thing. Assessments for my conditions exist. I know this because the attorney I called about my appeal sent forms for them to me. You know what’s super nice? It’s nice when people don’t assume they know me from a vague form. Social security assumed my pain was not that bad and my anxiety was manageable but they never did any proper assessments of either situation so when a third party enlightens me to the fact those assessments do indeed exist it makes me a little peeved. If I tell you about a condition and some kind of functional assessment exists for it than why didn’t Social Security do that in  the first place instead of making me jump through hoops to use the social security I’ve paid for since my first check from Big Lots at age 14. Why are honest,hard-working people who truly have worked to their limits being forced to fight for something they’ve basically paid for already? But I guarantee you if I failed the “psychiatric exam” I’d have it because I’d be stupid and therefore what they deem as disabled and not work competent. Now again you might think that’s an awful thing to say but I’ve been slipping through the cracks of the mental health and public assistance world for well over ten years now. I’ve seen the system inside and out and it’s bad. Things like addiction,laziness,and stupidity somehow get translated to disabilities quicker than actual disabilities.

Don’t get me wrong here. I think people truly do need help for things like substance abuse  but it’s not a disability. It’s a life choice. You’re choosing to engage in it and with the right aids such as rehab you can choose to not do it. I’m going to wake up depressed and in pain everyday and be crippled by how terrifying light and noise is whether I like it or not until the day I croak. Disabilities aren’t things you choose. They’re things you have one way or another. If you can eliminate the problem with a choice then it’s not a disability. This should be a sort of common sense issue but the people being forced to fight for disability benefits are good people who are being forced to prove how disabled they are and there’s something almost cruel about that.

I think in general unless you are disabled it’s very hard to understand all the things a disabled person goes through on a daily basis. Whether it’s the stigma,the dehumanization,the invalidation or people just assuming all around you really always live your life feeling like the elephant in the room and that can be a hard thing to deal with a lot of times,especially when you don’t feel accepted or loved.  Some people think they’re doing the right thing but at the end of the day they probably only  know how to do the right thing for them to the point it’s still comfortable or convenient for them.

As good as it feels to express myself even a little I know it really doesn’t matter. I’m going to die the same useless hunk of damaged flesh I came into the world as and not even be a flash in  the pan for most people. It’s about as comforting as it is sad really. I’ll just be another disabled person society forgot. I’ve lived my life essentially being alone and invisible in a crowd of “normal” people. I don’t think anything can really change that at this point. It doesn’t matter how I see me or how I want others to see me. I think it’s just biding my time until God is nice enough to not make me wake up again into a world that doesn’t want me.

I can’t really explain it but after working so hard for so long to just be okay all I’ve gotten is the conclusion I’m not okay and it’s never going to be okay. I’m damaged and unwanted. No amount of pills,therapy.or hope can change that. I’m just tired at this point. I don’t what I did wrong or what I’m supposed to be doing….I just want to be done. I feel so tired of waking up sick everyday and I’m just done.

I’m just….done.

 

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