Do you identify as disabled?

[Garbo]

I’m writing an article for a magazine, and the interest group brought up that many niche disability groups don’t identify as disabled. Epileptics were mentioned. Many are on disability, meaning we’re legally disabled, but personally choose not to identify as such.

If you don’t identify as disabled, why not? If you do, why? I won’t mention names.

 

[resaebiunne]

I've questioned this myself but I have trouble answering as such. I personally have two "disabilities", epilepsy, and one mental illness. However it is confusing. For employment purposes, you are to classify yourself yourself as disabled. However this does not mean that legally you are, so I have always wondered what the definition of disability was! It's ultra confusing, because if you work, you cannot be legally disabled (collecting disability). So what gives?!

Anyway, I am fortunate that between my two disabilities I can work (at least part-time for now) so I do not have to be "legally disabled" but I DO identify as disabled. It's really not a big deal. There's no point in hiding it.

 

[valeriedl]

Legally I'm considered 'disabled' because I have epilepsy is because I'm on disability. I don't consider myself disabled though. I don't work because of the disability but I don't think I'd want to even if I could.

My seizures come on at any time with no warning and they can be anything from a simple partial to a grand mal. Most people don't know what to do when someone has a seizure even if they are told, they're usually scared to death and just watch it happen. It seems that the only people who know what to do are the ones who see you have seizures frequently. I've had seizures quite a few times in public, luckily I've always had someone with me who knows what to do when I'm having a seizure. I had a grand mal once in public. I was laying on the ground shaking like crazy and everyone just walked by me not coming over to see if I needed help or if they should call 911. My husband was with me and it took him forever to get some help while he kept me ok. I've hurt myself pretty bad a good many times at home and in public when I've had one so I can't imagine what I'd do if I was around people who don't know how to help.

I can walk, talk, see, don't have to spend 24/7 in a hospital bed, don't go to the hospital every time I have a seizure or need someone to help me do everything because I have epilepsy. If any of these things were the opposite or if I was missing a limb then I probably would consider myself disabled.

 

[Pingu]

I don't consider myself disabled as I am not confined to anything and can still somewhat live a normal life, my government doesn't consider me disabled either!

(When I attempted to claim the disability support pension when I was first diagnosed, I was refused because I didn't meet their definition of Epilepsy, despite the seizures and all medical evidence saying otherwise, it's because my medical condition has been formally identified as Grey Matter Heterotopia so they said it's not Epilepsy, you are ineligible for it).

 

[Porkette]

Hi Garbo,
I know I could go on disability if I wanted to but personally I'm not going to let my epilepsy stop me from working and helping others out there who have it or other medical problems. I like working with students in public school who have epilepsy or other neurology problems to show them they can work and not be depressed or feel like they can't do anything a normal every day person does. This is one reason why I don't let my epilepsy stop me. I also like to teach students and staff about it so if they see a person have a seizure they will know what to do and not to be afraid.
I had 2 surgeries to help reduce my seizures and this is another reason why I don't feel like I'm disabled because I know I have tried. Good luck to you with your article and May God Bless You!

Sue

 

[CQ:)]

I don't consider myself disabled as I am not confined to anything and can still somewhat live a normal life, my government doesn't consider me disabled either!

(When I attempted to claim the disability support pension when I was first diagnosed, I was refused because I didn't meet their definition of Epilepsy, despite the seizures and all medical evidence saying otherwise, it's because my medical condition has been formally identified as Grey Matter Heterotopia so they said it's not Epilepsy, you are ineligible for it).

I was going to post something similar, how the Australian government doesnt class epilepsy as a disability and as a medical condition so it is extremely difficult to get on disability pension if you have just epilepsy.

I tried twice as well, 1st time was in 2004 when I lost a job after having a tonic clonic seizure. I was told I could still work.

The 2nd time was in late 2010 when I was in the process of going through presurgery testing to see if I could have brain surgery. I was told that my epilepsy wouldnt be classed as treated until after my surgery. I thought what a load of rubbish because my neuro at the time had been treating my epilepsy since 2002 with meds which weren't controlling my seizures which is why I had to go to the next stage which was the surgery.

 

[CQ:)]

I don't consider myself as disabled. There was a while when I was having a lot of partial seizures which made it hard to get a job. I got paid work when I could and did voluntary work when I wasn't working.

Then I had surgery in 2011 which helped reduced my seizures a lot. I was also able to get my 1st full time job in 2013 where I worked until last year. I'm now working at another job where I've been since end of last, year.

 

[seagull]

I CRINGE when people say epileptics for me and some other it feels like n word.AS a woman with epilepsy it depends on situation if you applying for blue badge or disability mobility you no choise you have say disabled for those purpose you are,You not allowed to drive so need transport that a disability particulary if you working lost your job because of it then you run with it shoot self in foot if not.

 

[masterjen]

I have a couple of conditions besides epilepsy that affect me physically but I don't consider myself as disabled, and just recognize that some things I cannot do as easily or as well as others can and some things I simply cannot do at all. It's other people who often define me as disabled, because they think "everybody" should be able to do this or that, and do these things in a way they've predefined as "normal".

 

[seagull]

I don’t know your country but in Uk some people abuse system I don’t get it on that alone it can be difficult to define it.Some people in wheelchairs do London marthon it kill me but they whip round on other hand I could get on train go anywhere they not.to be honest migraine disables me more than anything,I dread making arrangements incase of one and I in dreadful state you never get disability for that my panic attacks is part of epilepsy that awful you may get something for that if comes with other things but. For red tape you have say it.Deaf people ones that sign that tends be up to them some say it no effects life but for others it do they not be piano tuners that example I could not be taxi drivers if your livelihood and retrain for something else your retirement a year away you lost job could find yourself destitute for a year.You have use sense using old fashion words like epileptic you cease to be a person,that my point of view.My granddaughter is disabled but she at normal school do everything others do she has CP I not sure if my son tells people she disabled but they went to Disney expensive but all entertainment food etc was given free if disabled child of course he going to say that you do have to have prove it,she would been denied a lot of if not. One day she can say If is or not.In my son case he fefuse any money allowance but she needs certain things like extra help at school you only get if register as disabled as I say it common sense as to what you are,it makes me very angry those who claim disability and they not it negates those who are disabled

 

[Garbo]

These are really interesting responses! Thanks! I wonder how much of interpretation depends on a person’s country and upbringing, too?

 

[tendencytodream]

This sounds like it will be an interesting article!
I do identify as disabled but it's only been recently that I've really begun to even though my situation itself hasn't changed much. I've done some work with museums on disability history, and have started following some people with chronic illnesses on instagram/youtube which kind of normalize certain issues.
I'm disabled because I'm unable to work and receive disability benefits, and there are some things I am unable to do. I think it's important to be more assured in saying so, especially at the moment when people with disabilities/health problems are treated so badly by governments and society.
If we can have a voice and be strong when others can't and haven't in the past then maybe that's important.

Please post a link to the article when it's published!

PS. I agree with seagull about the word "epileptics", it's definitely safer to go with "people with epilepsy" for the article (Check out "people-first language" on Wikipedia)

 

[Garbo]

Thanks for your response! I should note why I use epileptic over person with epilepsy, although for the article I will clarify. Language, especially language around marginalized individuals has changed and become more politicized. Scholars like Alison Kafer and Nancy Mairs have written about this shift, as well as the blunt ownership. As an epileptic and a scholar, I deliberately use the word epileptic because it makes people uncomfortable and invites questions, conversation, etc. it’s a political act.

I’m more than happy to post it!

 

[Sabbo]

I use both, epileptic & person with epilepsy. I don't use or care for the term "seizure disorder". I may try to go on disability, but I know it will be hard to get. I've tried to work a few times but have had to stop due to my epilepsy. A complex partial seizure occurred at the commuter train station one morning, & I nearly fell on to the train tracks. Another time, I had one when I left my office, and collapsed on the sidewalk.

 

[resaebiunne]

I've considered going on disability, but it seems nearly impossible to get, and the benefit is so little. I could barely survive on what little I would earn from disability. Not to mention it takes months, sometimes even years to get disability. I would have to have the backing of my family (mostly my mom) to do it, and it would probably be a lifelong commitment. Once you get disability, you have to continue to prove you are disabled to continue to earn benefits.

At least for me, I feel like I'm stuck in a crack between two pieces of ice in a glacier that's moving up-hill and re-freezing.

 

[tendencytodream]

Thanks for your response! I should note why I use epileptic over person with epilepsy, although for the article I will clarify. Language, especially language around marginalized individuals has changed and become more politicized. Scholars like Alison Kafer and Nancy Mairs have written about this shift, as well as the blunt ownership. As an epileptic and a scholar, I deliberately use the word epileptic because it makes people uncomfortable and invites questions, conversation, etc. it’s a political act.

I’m more than happy to post it!

Oh cool! I'll check out those authors

 

[Pinkhorse]

I am fascinated by your post and your clarification of using the term "epileptic." The idea of ownership is something I've not considered. For a long time I worked as a health professional with people with diabetes (see!) It's the idea that the person is not only their disease. I'm sure you've thought your way through all of this and it's interesting to consider it as a political act - which I understand. You've given me a lot to think about. I am new to epilepsy and I'm not sure how, even, to describe myself to myself. (BTW, yours was the first--and only, so far--post I've read. A great introduction! Please let us know more about the article and how we can access it when it's available.

 

[seizuregirl]

I refer to myself as disabled only because of a surgery I had done a few yrs. back that was supposed to help with my seizures, which messed me up more than they thought it could, or would.

Before that, I didn't think of myself as disabled, I was able to work with them but had to quit because of them. I tried to apply for disability but was denied since I had worked while having seizures for over 10yrs. After having surgery, I went to court with the govt, with 2 different dr.s testimony stating that wouldn't be able to work again, contrary to what their "dr's" said, and finally got SSDI.

 

[Garbo]

Hey! Sorry for sort of falling off the wagon! I've been busy with work and writing my diss, but the article is finished and I got the letter approval for its publication. I'm really excited to share it with all of you. I hope it's pretty generous since it's more of an examination of how the term "disability" is really complex and why so many people resist identifying with it and why. I also look at other chronic illnesses, mental illnesses, etc.

Anyway, I'll cross-post it to my personal blog about epilepsy once it's publicly posted.

Thanks again for answering the questions. I really enjoyed reading all of your responses, which are so thoughtful and are important to think through when thinking about identity.

 

[Pinkhorse]

WOW! Congratulations! Would love to read your dissertation. It sounds brave and important!