Am I really disabled? Internalised able-ism - insight shared and sought about beliefs about ones own and others capability :-)

Understood - I employ the "substantial and long term adverse effect on a person's ability to carry out day to day tasks"  definition.  Under which, whilst the individual may be able to do things the  consequence of their experience (e.g. exhaustion and anxiety) is substantial and this ls a long term adverse effect.  Semantics aside, I am pleased that your analysis works for you :-)  

Simple. I do things, therefore I am not disabled from doing them. Disable, means, "To deprive of capability or effectiveness." Making things more difficult is not the same as disabling.

I know that I am a grammatical pedant, but that is how my brain works

As an example, I found going into large crowded halls to take important exams hugely difficult, my anxiety would be sky high. I had what I now realise was a panic attack at the start of my first A-level paper. However, after a short delay, I finished the exam and got a good grade. My autism did not disable me from taking exams, or doing reasonably well in them.

I have a very stoical mind-set, I have never allowed my discomfort, sensory or psychological, to impede me from doing what was necessary to achieve the things I considered important to me. Have I paid a price in exhaustion and anxiety? Undoubtedly, but I consider that it was worth paying. The depression and anguish from not achieving things that I wanted badly, would have been much worse to live with.

Nice to know it's not just me!

I find it easier to let other people make the decisions (mainly my wife) then I know they're "ok" , rather than having to try and work out what I should decide. Downside of that is it leaves me feeling like I have no control.

I also debate what to do if I get a break, then end up doing nothing a lot of the time!

Another Autistician said:

Already today while working from home alone in the house, I've had a conversation with myself about what I want to do, as I was thinking about how I don't do much socially and should do more. I asked "but you're basing that on how much other people do, what do you actually want to do?!" And came up without an answer, I felt a bit anxious at the pressure of having to think of what I want!

OMG you have almost painted a reflection of me!!

I too struggle daily (whilst working from home) about what I want and can't come up with an answer.

Over the decades I got so used to having to think about what I should do, what society would want or other people would want me to do say or think and what would look best to fit the situation, I started to do it subconsciously while even on my own.

Already today while working from home alone in the house, I've had a conversation with myself about what I want to do, as I was thinking about how I don't do much socially and should do more. I asked "but you're basing that on how much other people do, what do you actually want to do?!" And came up without an answer, I felt a bit anxious at the pressure of having to think of what I want!

Unfortunately, I think it’s obvious to everyone only if it’s obviously visible. Being severely disabled is hard. But having milder symptoms is also hard, because it’s harder to get help. 

Thanks Alien0n3arth  It is strange that we rely upon society to explain to us how we personally feel. Believing that one has problems that other people do not seems to me to be difficult despite it being so obvious. 

Tears_before_bedtime "...a physical or mental impairment that creates a ‘substantial’ and ‘long-term’ need for reasonable adjustments to be made by wider society in order for you to be enabled to do normal daily activities."  might be a nicer way to put it perhaps?

The initial definition has at it's core "internalised ableism" in how it is crafted perhaps...

Martin  How do you reconcile finding things far more difficult to accomplish and not considering yourself disabled?

I concurAnother Autistician  - that sense of "who am I" was very much to the fore after late diagnosis for me and yes allowing oneself to be oneself is tricky even when alone.  Perhaps another way of considering it is that rather than losing one's identity thro' life it may be that one is trying to discover it?  There are certainly many things is drawn to do that appear to be a reflection of self.  Being *in the moment" enough to be selective about this I find tricky - especially so when anxious or stressed.  There are a different range of reactions one makes perhaps according to how stressed one feels - exploring the correlation between stress and personal behaviour seems to be a useful approach?

Yes, concur with problems in working out what adjustments are necessary. 

I propose that the "internalised ableism" meaning that I wasn't able to appreciate the relative difficulties experienced.  

This may have also contributed/been correlated the development or exacerbation of alexithymia (mind blindness) for me.

In contexts where ableism is prevalent, the resulting chronic stress and negative self-perceptions may further impair one’s ability to access and articulate emotions, thereby contributing to alexithymia.

I am inclined to think it easier to observe and make inferences about how someone else is feeling and what may be triggering it than I am about myself in areas of long established difficulty.  I believe that is likely the case often in wider society and not just autism.  For this reason I believe specialist autism support is what is required to identify the adjustments required.

I think that perhaps the tribunal route is more demanding upon a variety of personal resources for all concerned - including time and commitment.  Perhaps it also signals as unions not being able to help their member to resolve the problem and they remain engaged to do so even when evidence suggests they are not.

In respect of wanting to "get even" with employer this has become a similar obsession with me too.  In a sense it has become emblematic of struggles in a wider sense - albeit one that is meant to be formally regulated and supported by employment and human rights legislation.

In respect of it becoming an unhealthy obsession I sense the irony there.

In my case I am turning it into a wider issue where my case is emblematic of how the employer is behaving to others as well.  Making it not just a personal struggle helps me feel better about.

Best Wishes

just a screenshot from quick research. I’m not sure if my disability name is autism or some other condition that gives similar symptoms (I have some ideas what that could be instead) but I know I’m mildly disabled. Long before I got any idea about autism etc I had thoughts that I’m some sort of disabled but it’s not so visible to others that’s why I’m always inferior and nobody believes I have certain difficulties that others don’t. Now it seems to explain perfectly why it’s so hard. 

Sorry for the confusion here. What I meant is I have no idea what 'the safest thing' meant. Things are really bad and I have not been in my department for nearly 2 years. My union is dragging its feet and this echoed a point that was made to me by someone else in a similar position that their union wanted to keep them in employment rather than tribunal route.

I too have played the long game in hoping that there is enough rope to hang them! But I grow impatient waiting for the 'drop'

It has become all consuming and unhealthy obsession for me now.

I think you're right that it's all about circumstances and context. If your normal daily activities don't include going to a big supermarket or commuting on a busy train then the fact you'd find doing so really difficult doesn't figure into your assessment of your own ability/disability.

My understanding of The Act is that there is guidance on what "counts" as disabled that doesn't rely on your personal assessment and you can be classified and treated as having rights based on disability even if you don't think you are disabled.

I'm not legally trained and this isn't advice though, just my personal understanding!

From the DSM one of the criteria for diagnosis that has to be met is "Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.".   So for me that meets what's quoted above from the equality act.

What always worries me around this debate - is that it could easily be used to take away what limited support and protections there are.  Circumstances change.  For some people, with their current circumstances/environment everything may feel fine and they say they're not disabled.  Those circumstances or the environment changes and it may be people suddenly need that support or protection.  

There is a stigma around the word disabled you're right and to me that's one of the things we need to help change.

It's a very interesting thread.

I don't personally see myself as disabled, if I'm around like minded people I'm fine.

I. General society I have issues, so to me that suggests that society is the disabling factor.

Problem is that any society will be made up if the mean average or "typical" , so anything that is either side of that mark will have issues.

One thing that worries me about the masking I've done all my life to get by is that, I notice I wear the same mask even when I'm alone now. I worry I'm losing my real identity.

I do not consider myself as disabled in any but as a legal way to protect myself against potential discrimination. My autism does not prevent me from doing anything I really have a desire to do, but it can make things far more difficult for me to accomplish than any neurotypical experiences.

I think I too am about where Joe described they stand on this conundrum.

(I appreciate you articulating this complexity in such a clear way; that I feel renewed confidence to try tackling my GP Practice on this topic, yet again.  I think the time has come that I ought to a) choose someone to accompany me for moral support, and b) ask for a meeting with the Practice Manager).

I have previously taken the trouble, in writing, to let them know the simple (reasonable) adjustments which make it possible to engage with a healthcare setting, they ignore it, I struggle to achieve their progress in my health matters support, they bark at me (over the phone, when they phoned me and I had previously asked them not to do so) "tell us how we can help you", I refer them back to my (unchanged) simple adjustments list. 

Groundhog Day!

(Before I composed my adjustments list, I had taken care; to first check through, and select from our County's NHS Reasonable Adjustments Service lists of things which they suggest might help).

Disability is defined in the Equality Act 2010 in purely negative terms:

"...a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities."

My reading of this is that autism can "officially" be a disability, but it depends on the level of effect on you personally.

Effect is cumulative, so while needing to wear earplugs in public spaces probably wouldn't be disabling, if you add to it not being able to use busy public transport or go to large busy supermarkets or attend a family birthday party without significant distress or fatigue, then it probably would be classed as a disability.

I'm disabled and am at ease with that "label". I have bipolar, tinnitus, migraines and am now diagnosed with autism. I don't think my migraines are frequent enough now to be a qualifying disability, but the others stand as they all have significant effects.

Disabled is a negative sounding word and the definition is negatively phrased too. However, I just see it as part of me. I need to take into account my "disability" limits when I plan or do things, but that's just reality for me and I see no point trying to deny it in my case.

Other people will see it differently and may identify differently too and that's fine as well. It's an individual thing.

Thanks Lotus 

I am pleased things work well for you and that you have no negative associations with disability.

I concur with your comment about not wanting to think of oneself as disabled, the social creation of the disability and the value of the double empathy analysis.

all the best :-)