Disability

[Cogs Of My Cranium]

It's taken me about 3 years to accept that I have Asperger's and I feel I do accept it however I'm still coming to terms with the idea that it is a disability. I went through 27 years of my life knowing I was different but I never thought of myself as 'disabled'. I'm not sure why I have a problem with the idea of being disabled...perhaps it's the social stigma..? I'm really not sure. I don't have a 'problem' with it as such but I am shocked by it. I also don't want to seem arrogant/intolerant etc by having these thoughts. I think maybe it's shock. If it is then have I really accepted my aspergers? I'm just kind of bothered about how my counsellor thought that I haven't accepted my aspergers. I don't know how much more percentage of acceptance I need to achieve full acceptance lol. It's a processing thing.

I'm interested in how other people have processed their diagnosis.

 

[photoaddict]

I'm not formally diagnosed (can't afford it, but would really like to be, just to have it done). I can understand it not feeling like a disability, though. Most of the time, I don't feel disabled. Different, yes, but not disabled. It can cause me issues. I have pretty serious anxiety and sensory issues. The sensory issues can make it difficult to do some things, but I've always just found ways around them.

I've accepted that there's a 99% chance that I have ASD. I'd really like to get that confirmed, at this point. For one thing, it would open up options like a therapy dog, which would help with my anxiety. I don't think you have to feel disabled or less than to accept that you have it. It's something that is a part of you and always has been. It's not like cancer, where one day you're healthy and the next you're not. You're just you. I tend to see a diagnosis more as an explanation of my quirks than anything.

 

[Suzanne]

I had not even heard the word: Aspergers, until, reading a magazine one day; about 5 year's ago, of this young girl, who suffers from Aspergers and how it effects her life, I thought: oh my goodness me, that is ME. It was not embarrassment of crushing feeling, but a sort of amazement, but also a feeling of unreality, because of course, it is easy to read things and think we have them!

It was when my husband accused me once again, of taking him too literally, BANG up came that article in my head and I could not hold back and said: funny you should say that, but! However, I should have known my husband just laughed and said: Suzanne, people like us do not get those kind of things; meaning, there is nothing special about us, which little did I appreciate at that time, but caused a meltdown and after that, I decided that really, I am imaging things and after all, NT suffer aspie traits too!

But it got stronger and stronger, especially as I kept seeing aspergers cropping up and I tell you, I had not even heard the word before!

I feel disabled with what it does to me, but certainly not disabled with being an aspie; actually as another aspie put it so aptly: if there was a pill to cure aspergers in me, I would not take it!

At last, I feel less like an alien for I have the answers to all those questions of: why can't I make friends? Why can't I understand the social aspect of it all? Why cannot I look people in the eyes? Why do I hear a sound and think logically I head a sound and then, act? At first, I felt that I was just really slow off the mark, which embarrassed me? I am not like other females at all, and yet, despite that, am very feminine, but I just do not connect well to my own sex.

I am embracing this and feel proud and find that amongst aspies here, I am rather weak where talents are concerned. Although I do read emotions very well and am highly empathetic (sorry for coming across as arrogant), but I am also recognizing that I have to think: this person is such and such and so I must be such and such. I work also on the basis: how do I want people to treat me? So shouldn't I treat people in that way?

Because I get obsessed with the click of a finger; I have created in my husband, a hatred for the the word: NT as he feels it is an insult, but I suspect he is looking at the: TYPICAL aspect, rather than the fact that he is "normal" compared to me, which he shows every day! I have to be careful!

 

[King_Oni]

From day 1 I already told myself "well, it is what it is". It didn't mean I stopped putting up a fight and try to get somewhere, but it did at least put my past failings in perspective.

As such, I myself haven't had a big problem with my diagnosis about 3 years ago. What I am having a serious problem with is how there are expectations from me, of which, by now I know, I can't possibly ever meet, and how there's a proper lack of support so people are even on a level playing field alltogether. That is my main issue with my AS. I can live my life perfectly fine like this. I don't get upset over my AS and in a sense I quite like me, for the way I am. It is however when employment, education, income come to discussion where I just don't see it going anywhere productive... and the more I think about it, it's not that I feel inadequate as a person; I might just be made to be felt inadequate as a member of society. And thus, it's others trying really hard to project that on me, not me, myself doing it.

I never considered myself disabled, but then again; it might depend on how you define disabled.

This might illustrate it best;

 

[StephF]

There's two ways to look at this.

1) Do you feel disabled ? If not it isn't a disability
2) If the state says there are benefits for people with disability then use the label.

Its all done to how you choose to define "disability"

 

[ZackSkylar101]

To add a fun spin into things, there are different sociological models for disability and these are ingrained into society and how we perceive disability. The three major models that I have discussed in classes previously are:

- The medical model - States that a person is disabled due to their illness. They are not able to do things because of their diagnosis and that is why it affects their life.
- The social model - States that a person is disabled due to the world not being made to suit them - To bring the picture that King_Oni posted into it. The fish (the one that jumped out at me the most) is disabled because the test is not made properly so that they can take part. If the test was testing their swimming instead, then they would not be disabled. So if a person is in a situation where they are perfect for it, then even if they have a diagnosis they are not disabled (An example I use for this is for myself: I use tinted glasses sometimes due to visual hypersensitivity. If I am using those then I am no longer disabled by my visual hypersensitivity).
- The biopsychosocial model - A mixture of the medical and social models which is, in the opinion of some people, a bit more realistic (it notes that there is a component in which a person is disabled due to their illness, but accepts that you can reduce this a lot by changing the world and putting in adjustments).

With this I class myself as disabled sometimes, as if you stick me in a party environment then I will not be able to think straight due to the various degrees of sensory overstimulation and so I am disabled in regard to me talking to others and being able to do anything sensible. However I am not disabled when I am in my room by myself with all of my stuff working properly. I think it is about how you see the idea of disability that changes how you think about it.

 

[Keith]

I've had a history of attention problems, not staying on task, emotional problems, social issues, and obsessive-compulsiveness. I used to think it was just how I am, but now I've come to understand that it's my Aspergers causing me to want to function "my way". If I try to change any of it so I function like a "normal" person, it's like being a computer and getting a "does not compute" error.

Accompanying this, unfortunately, is epilepsy. I started having auras in fifth grade and my first seizure in high school. I am fortunate that I do feel an aura maybe five seconds before the seizure so I have time to get into a safe position.

 

[epath13]

I was ecstatic and hoped that everybody would be as happy as I was. But... it wasn't the case. A lot of people didn't realize that I programmed myself to say and do certain things, not because I felt or thought that way but because when I observed other people I figured that kind of behavior would be appropriate for a human being sometimes I would get confused and, as a result, create a conflicting image in people's mind, "wait! I thought you were this person, now you this person?! so who are you exactly?!" most of the time I was pretty consistent... sometimes I would get bored and throw something unexpected at people... after the diagnosis I gradually became more "myself" ... let me see what it means... I began to express what I actually think no matter how contradicting, cold or weird it is. The only things that stayed the same are imagination and creativity with a hint of crazy. I would say, I became more solid as if I got a permission to stop trying to be like a regular human being.
As for disability, I think you can consider yourself as a disable person (and for me it's just a term, it's not a label, it's something you can call yourself when you're approved for disability payments or any other type of benefits) if you are... have less chances to take care of yourself and need financial or physical support... If I had a job, I would love some supports available to me, for instance working from home, taking sensory breaks if needed...
I think maybe people so preoccupied with disability because of the word itself. I think there should be codes for people that have different needs. Let's say you are in constant pain or... I don't know... have a few seizures a day or something... partially paralyzed, you would probably need some physical and financial support so you would be put in a category A-14562 (some random numbers ), if you have ... let's say, sensory issues, you would be put in a category C-78394... etc. So you could say something like, "I'm B-43979 that's why I qualify to have a personal assistant partially covered by my insurance (or the government)" and another person would say, "Oh, really? I'm actually B-45979, that's why I qualify for full coverage". the 1st person would say, "Hmm, interesting. So how would get into the B-45979 category, I would love to have full coverage" etc

So it would be about individual needs not psychological labels...

Honestly, if I qualified to receive any type of disability support I would take it and run with it. It's just I feel a little embarrassed, because I think other people probably need it more than me...

 

[AsheSkyler]

The way I figure it, if I'm disabled for having trouble understanding disembodied voices on the phone and cleaning chemicals make me sick, then nearly every person I ever worked with was also disabled because they couldn't spell correctly ($%#&@ chatspeak...), were horribly disorganized and could never find anything, obviously couldn't read a clock or didn't understand the little numbers else they'd gotten to work on time and also stayed for their full shift, and were also more socially inept than I was because I had enough sense not to discuss their weight because I knew it would bother them but they'd tease me about mine anyway. I don't think I'm disabled, my strengths simply lie somewhere else, the same as the next person.

 

[Sarsaparilla]

I don't have a problem with calling my Asperger's a disability - but I think it's a individual choice how you want to label it or not label it. Nobody should have the right to tell you you have a disability if you don't see it that way, or tell you you're not disabled if you say you are. It has annoyed me when I've come across NT support workers who insist on calling it a 'difference' - it's fine if an Aspie or autistic person themselves wants to call it a difference, but an NT doesn't get to define it for the person.

I feel disabled when I cannot do what I want to do because of either my Asperger's or my mental health problems. For example I want to get my nephew something for Christmas that's not available online so I have to go to the shops, but I'm feeling completely overloaded at the moment and can't handle the crowds. I'd like to also look at the Christmas markets and go ice skating but again there's no point because the crowds would just distressand annoy me (and I don't have anyone to go with anyway and I'd be awful at ice skating because of my clumsiness). My problems with executive functioning also stop me from doing what I want to do, as I have difficulties with planning and organising. I also find that if I push myself and do too much particularly if it involves a lot of sensory overload, I have to spend time recovering even if I've got better things to do which a non-disabled person would not need to do. Also I'd like to have more friends but I find it hard to connect with people because of my disability.

 

[clg114]

I've been a Aspie for 69yr. and I am not disabled, nor have I ever been disabled. That being said, I understand that we're all different and that some people may be disabled because of their AS. You probably are disabled if you think you are disabled.

 

[phoe]

We all function at different levels, and have just got on with things and coped as best we could. For that reason we don't think of ourselves as having a disability / problem with things, we just "did" it.

It's only possible to put it into perspective if you're able to look at your range of deficits from a detached point of view - notionally I don't think of it as a disability in my case, but if I was being pragmatic, I know it is.

 

[Vinca]

A spoon is a very efficient utensil for eating a bowl of jelly with but is a very inefficient utensil for slicing a loaf of bread with.

I feel that there are alot of everyday, common place aspects of life that I am not able to deal with in an efficient manner, in the same way that a spoon is inefficient at slicing a loaf of bread. I feel less-able or impaired.

I can't do quantum physics but I don't feel disabled, less-able or impaired as a result, because I have absolutely no need for it in my day-to-day life. I do need and want to interact with other human beings and the difficulties I experience make me feel less-able and impaired.

When I think of being disabled I think of a person as being incapable. I don't think of myself as incapable just impaired or less able.

 

[Rob]

It's taken me about 3 years to accept that I have Asperger's and I feel I do accept it however I'm still coming to terms with the idea that it is a disability. I went through 27 years of my life knowing I was different but I never thought of myself as 'disabled'. I'm not sure why I have a problem with the idea of being disabled...perhaps it's the social stigma..? I'm really not sure. I don't have a 'problem' with it as such but I am shocked by it. I also don't want to seem arrogant/intolerant etc by having these thoughts. I think maybe it's shock. If it is then have I really accepted my aspergers? I'm just kind of bothered about how my counsellor thought that I haven't accepted my aspergers. I don't know how much more percentage of acceptance I need to achieve full acceptance lol. It's a processing thing.

I'm interested in how other people have processed their diagnosis.

I had a lot of trouble interacting socially in high school, though I had academic achievement awards. My life has been one of incomplete achievements despite doing "well" in school. It was putting my knowledge into practice that made my life exceedingly difficult. Teamwork and motor-skill deficits, as well as learning disabilities, conspired to prevent me from realizing my goals. As a result, I had to go see a mental health specialist upon withdrawing from a pharmacy technician program. I joined a Day Treatment Program for mood management and anxiety at the Royal Inland Hospital in Kamloops BC as I waited for psychological test results.

Finally after many weeks of waiting, I got my Asperger's diagnosis. In a way I felt relieved as I was able to explain why my life had been so spotty. The next challenge was to follow my psychologist's recommendations to apply for Persons with Disabilities benefits from the Government of British Columbia. After gruelling paperwork and waiting for weeks more I qualified to get my first government cheque! Great news! While I was still in "limbo" in Kamloops my parents wanted me back home in Golden. Finally I came home after many months - and my employer invited me to come back to Chevron Town Pantry here in Golden.

The details are too much for me to fill in right now but this sums up my experience. I am very grateful as to how things developed in the end for me. Plus I made new friends there from therapy groups. They still want me to come to Kamloops for a reunion. Right now one of them is seeing if our group therapist could join us. She was a real pleasure to head our therapy groups. What a radiant, sunshiny personality she had - we all felt better right as soon as she came into the room!

 

[red_dog]

I am in my 30s and was diagnosed about 18 months ago. I hadn't even suspected I had Aspergers until my psychologist suggested it shortly before my diagnosis, despite having studied ASD as a teacher. But when I thought about it it made so much sense. I had always felt different, but it had been explained as shy, quiet, introverted... the Aspergers label made it much clearer what the areas I have difficulties with. I was excited to get a diagnosis as I felt I would finally be able to get help with the difficulties I had been having.

I also had trouble with the idea of having a disability, as I have always felt competent and able to do things. Seeking support from a disability employment service was not successful for me as they couldn't work out any way they could help me. As I was struggling at work I revealed my diagnosis at work to be able to request reasonable adjustments. I felt uncomfortable revealing this, and only told a couple of people at work, but one told others without my permission. I was then forced to move into a lower position and was put through a range of psychological testing before they decided that they couldn't support me & was terminated. So these experiences made me reluctant to accept that the disability label would help me.

Meanwhile I started seeing an aspergers specialist psychologist, who has the really positive view that it is not the person who is disabled, but the environment that they are in that is disabling. Similar to Zack's fish example. She helped me to see that Aspie traits are just different from NT, not worse.

Despite a diagnosis and considerable difficulties keeping a job, I can't access any disability support from the government - either monetary or services - as they say I can get employment, so don't need any disability support. So unfair, as I am in a constant cycle of getting a job, struggling with it, loosing the job, unemployed living off my previous earnings until almost out, then getting the next job. Very stressful & not good financially.

I feel that being an Aspie is something like being indigenous, it is a group that I share characteristics with. Sometimes belonging to this group can be a disadvantage, but it doesn't need to be and could even be useful at times. I don't see it as a disability & I don't think others treat me like I have a disability as it is so well hidden.

 

[King_Oni]

To add a fun spin into things, there are different sociological models for disability and these are ingrained into society and how we perceive disability. The three major models that I have discussed in classes previously are:

- The medical model - States that a person is disabled due to their illness. They are not able to do things because of their diagnosis and that is why it affects their life.
- The social model - States that a person is disabled due to the world not being made to suit them - To bring the picture that King_Oni posted into it. The fish (the one that jumped out at me the most) is disabled because the test is not made properly so that they can take part. If the test was testing their swimming instead, then they would not be disabled. So if a person is in a situation where they are perfect for it, then even if they have a diagnosis they are not disabled (An example I use for this is for myself: I use tinted glasses sometimes due to visual hypersensitivity. If I am using those then I am no longer disabled by my visual hypersensitivity).
- The biopsychosocial model - A mixture of the medical and social models which is, in the opinion of some people, a bit more realistic (it notes that there is a component in which a person is disabled due to their illness, but accepts that you can reduce this a lot by changing the world and putting in adjustments).

With this I class myself as disabled sometimes, as if you stick me in a party environment then I will not be able to think straight due to the various degrees of sensory overstimulation and so I am disabled in regard to me talking to others and being able to do anything sensible. However I am not disabled when I am in my room by myself with all of my stuff working properly. I think it is about how you see the idea of disability that changes how you think about it.

I like the analysis of those models.

However; here's what I'm running into, and that makes it n-times more silly. The biopsychosocial model mentions adjustments, even if they are slight ones. In a predominantly NT society, and this might vary per country, I'm seeing more of the "but it costs money" argument being pulled. It's fair that expenses can't be ignored but in that case I'm not sure if governments should still complain in a passive/agressive way about how there are disabled people.

As for the social model; I quite like hypothetical situations, and some actually serve as neat allegories for real life. You mention tinted glasses. Much like you I have some visual sensitity and thus I wear a pair of shades most of the time. If we already run into situations where someone from social services keeps complaining how I should take my shades of and I ask them to dim the lights a bit and they're not giving in either... adjustments are miles away. Not to mention that I politely asked if we could sit in a more quiet office and not in a loud cubible park. If society already refuses to, even passively (meaning; I can and should ask for adjustments), support such an issue, the pessimist in me doesn't see a lot of good stem from it. People do their best to overcome their issues by adjusting in a way that works for them; and yet still we have "professionals" (who should know better and should have an open mind and people skills) who need to piss on this and complain how it's not appropriate. That's how you keep enabling disability; while at the same time pointing the finger at someone saying "he can't function".