What do you consider 'Disabled'?

[valeriedl]

There are so many people on here who consider themselves disabled just because they have epilepsy. I know I don't.

I don't consider anyone 'mentally disabled'. People know their colors, numbers, letters, your name, other people's names and the difference between a dog and a cat then you are good to go with me. When I'm having a seizure I can't do anything like that but any other time I can. So does that make me disabled?

- I have to wear glasses or I can't see. Am I disabled because of that?
- I can't spell worth crap! Am I disabled because of that?
- My husband has trouble with math. He can do the basic stuff: addition, subtraction, multiplication and division. But when it get's a little harder he can't do it. Is he disabled because of that? On the other had I'm great at math, everything to do with it. Am I a genius????
- People who are blind but they can read using braille and know what things are by feeling them. I don't consider them disabled.
- People are deaf but they can talk using sign language, read and write in order to communicate. I don't consider them disabled.
- I have family members who are color blind. They have made ways around it so they are able to know what the colors are. I don't consider them disabled, I think it's actually great that they've figured out how to do it on their own.

I don't consider anyone physically disabled either.
- Just because you break a bone you find other ways around how to do things. Sure you may have to use a wheel chair but they can still get around and do other things.
- You may loose an arm or leg but you can find ways to do things.
- If you have an organ transplant does that make you disabled either?
- You may need some type of surgery to make parts of your body work. I had to have screws put in my back because I had herniated discs. Before I had the surgery it hurt like crazy to lift things, turn, stand up or sit down but I could still do it. I had to use a walker for a few weeks after the surgery too but I just considered it part of the healing process, not being disabled.

Look at Stephen Hawking! He's one of the most 'disabled' people in the world but he can do more than most people can who aren't 'disabled'!!!!!

 

[masterjen]

To me it is a label of convenience for such things as the educational system, medical system and work force. If someone "qualifies" according to preset parameters as being disabled, it can be a benefit: for example a learning disabled child will qualify for extra assistance, a physically disabled teenager will qualify for assistive devices such as walkers and talking computers. If an employee at work becomes hearing impaired ("disabled"), he may be able to qualify to receive a special listening system to enable him to function adequately at meetings. And on and on. That is using the label in an objective way; to hopefully enable a person to get the assistance and support they need to function as able-bodied as possible.

On the other hand there is the subjective label of disabled. One may considered an aspect of themselves to be impaired (hearing, sight, physical abilities, mental abilities, etc.), but would not consider themselves as less-than-able (ie. DISabled). Many less-abled people learn to adapt and find ways to do things, so they no longer see themselves as un-able. Hence, they are no longer DISabled.

I know what I am saying must be a little confusing; I've wrestled with this also.

The stigma other people put on the less-able can make them disabled, just by thoughts, words and actions. It is like prejudice, in a way. What you say, what you do and how you treat someone can make them disabled whether or not the less able person sees themselves this way.

An aspect of a person's functioning can be impaired, but it does not mean they are incapable (ie. disabled). I cannot function adequately in the hearing world without hearing aids; my hearing is impaired, but I don't see MYSELF as impaired (ie. disabled). I think that's what it comes down to: do you see yourself as whole as impaired just because some aspect(s) of your being does not function as well as the so-called normal?

 

[Penny]

I am considered disabled to work since 2000 and collect SSDI because of it. I have Bipolar 1 (most severe form), social anxiety disorder and complex PTSD all of which make working unbareable. I worked fulltime from the time I turned 16 until I was 36. I have a degree in Early Childhood Ed and worked in various jobs with pre-k for special ed. children and in public school one year for special ed/behavior disorder grades 4-6. When I had my kids I stayed home with them and ran a licenced daycare in my home. I loved working but as time went by my disorders got worse and worse. I had to start meds and was in the hospital several times. I had to quit working as the panic attacks got so bad. I've had so many ECT's I cant count them to try to bring me out of suicidal thinking/depression. I cant volunteer for anything ahead of time or I panic and cant do it. Everything has to be on the spear of the moment. So yes I am considered diabled and cannot work but that does not stop me from helping others who are "disabled" too. I have a mental illness but I like to help and work with those who have learning and behavioral disorders. There is a place not far (few blocks) from where I live that has 2 different people (adults) I have developed friendships with, that have learned to trust me, that I will take shopping at Dollar General or IGA and go on walks and I don't feel threatened. It makes me feel like I am contributing to society. I just wish I could work in a home like that (I did in Colorado while I went to school) but my illness flares dramatically. Am I disabled? As far as being able to work, yes. As far as being able to function in life, no.
Now I have physical disabilities too between my stroke 2 years ago and epilepsy that was caused by it. Am I disabled because of it. Some would say yes. To a point I may agree but I am still functioning on my own. Yes I have been hospitalized several times but I thank God that I am sill "kicking" as my Grandma used to say.

 

[knothing]

By definition - disabled is having a physical or mental condition that limits movements, senses, or activities.

Epilepsy had affected me since I was 4 but never had a real impact until 6 years ago when the tonic-clonic seizure arrived which increased all the other seizures and got me on medication. Since that time I have had limits in areas which have forced changes. So I have a few limits which under the definition makes me disabled.
All this does is give me protection with the Disabilities Act(sadly I have needed it at work). Am I really disabled where I need a special parking spot (talk about abusing the word disabled) or government money?
No but I am disabled just enough where I need a little protection.

I have noticed something kind of funny. I have had a few people admire my fight and tenacity since the big seizures. Only now they notice because I have always been that person with the ability to take the punch and keep coming, I am just wired that way. So more or less we are who we are disabled or not.

I hope some of this made sense but if it didn't remembered I am disabled :lol:. Sorry I could not help that joke but like I said I am just wired that way, label or not.

 

[arnie]

I agree with what masterjen said above. For me, as well, disability is to a large extent dependent on how an individual defines it and how much they want to pursue that status. When I was a social worker I had one patient who was a 35 year old guy who had broken his back in a logging accident, was paralyzed from the waist down and had lost his kidney function. He qualified for Medicare because of his kidney failure, and he took that because otherwise he couldn't have afforded his care. Aside from that, he didn't consider himself disabled at all. His family had always farmed with draft horses and he modified his farming equipment so he could continue to do that. He probably did more physical work than any 10 of us put together. There were several people who were blind, had one or more limbs amputated, had fairly severe seizure disorders, and of course were all on dialysis.They continued to be quite independent. I had a number of patients like them, who probably could have qualified for disability but just didn't see themselves as "disabled". On the other hand, there is a person in my neighborhood, about 45 years old, who is on disability and I have no idea why. He walks perfectly normally, (mostly down to a local bar to drink and play trivia). I know he doesn't have epilepsy because I've talked to him quite a bit, he plays guitar in a band, rides his bicycle around. He seems quite normal mentally (when he's not stoned, and even then he's pretty normal, just really mellow!) and physically. I don't know what his qualification for disability is, but it seems to me that there would be many types of work he could do. Sadly, the people who abuse the system tend to give the whole thing a bad name.
Valerie mentioned Stephen Hawking. I thought of Helen Keller.

Onward!

 

[kirsten]

I'll repeat the definition of a disability but with its supposed synonyms:

a physical or mental condition that limits a person's movements, senses, or activities.
synonyms: condition, disorder, affliction, ailment, complaint, illness, malady, disease;

I have a friend who is blind. He has spent an absolute fortune on equipment to enable him to work and read--most people cannot afford even his braille printer. He's an editor and a writer with his master's in literature. He has a braille printer, a special program that reads out his mouse movements and text, and a whole host of other stuff that helps him when he's at his computer. He still needs me or others to scan books and manuscripts into his PC for him--he can't do that. And he's never gotten comfortable with his guide dog, so he doesn't go further than a few blocks alone. Other than that, he needs people to physically lead him wherever he needs to be--from chair to desk, room to room, and so forth. He doesn't find his way easily around his home so his girlfriend has hung bells from all the areas he knocks into so that he doesn't hurt himself. Although he is almost independent with his work (as long as there isn't a PC crisis, which can put him out of work for weeks) I'd consider his activities to be limited and, of course, his senses to be impaired.

His condition doesn't make him feel physically ill, as epilepsy does with us, and it doesn't surprise him with unexpected events as epilepsy does with us. Still, if we manage to find the right treatment and it works for us, we can function like any other healthy person. I am not able to be employed by someone else because my hours must adapt to my epilepsy, but I am self-employed and independent. The vast majority of the time, I'm well and am not disabled or impaired in any way. Any tonic or absence seizures I have are as disruptive as anything a healthy person might experience in their daily life.

When my epilepsy buries me, I can become extremely disabled, unable to work, to look after myself, to go out, or to socialise. Unfortunately, that has been the case for the greater part of the last two years for reasons directly relating to epilepsy and because medications have made me very ill. But I am not a disabled person. And if you think about it, lots of healthy people suffer from long periods of illness that disable them in similar ways--one of my friends just got post viral fatigue, and she'll be struggling to work for at least the next six months. Another had pneumonia that progressed to a level that had him in ICU with heart failure. It will take him a long time to recover. Another friend, who refuses to get help, is slowly losing his memory and his cognitive functioning. There's no telling what is wrong or where it will lead. So, illness is something almost everyone suffers from from time to time, as I do. I don't see myself as too different from your average guy on the street, aside from the fact that I can't work for a boss--which is a positive thing anyway.

The way I see it, in this world there are survivors and there are victims. Regardless of our physical condition, healthy or ill, survivors will flourish and victims will struggle.

Sometimes it takes a long time for a survivor to learn how to overcome and flourish. The point is that they are moving in that direction. Sometimes, survivors fall, but they get up again. I guess victims simply don't move forward and don't shove themselves above their problems, no matter how small they might be.

 

[Cint]

On the other hand, there is a person in my neighborhood, about 45 years old, who is on disability and I have no idea why. He walks perfectly normally, (mostly down to a local bar to drink and play trivia). I know he doesn't have epilepsy because I've talked to him quite a bit, he plays guitar in a band, rides his bicycle around. He seems quite normal mentally (when he's not stoned, and even then he's pretty normal, just really mellow!) and physically. I don't know what his qualification for disability is, but it seems to me that there would be many types of work he could do. Sadly, the people who abuse the system tend to give the whole thing a bad name.
Valerie mentioned Stephen Hawking. I thought of Helen Keller.

Arnie, maybe that is what people say about some of us with E. After all, I have had plenty of people tell me, "you look normal", after I've told them I have E, even the tech doing the EEG once. But I've never considered myself disabled as far as being a person who can function on my own and I've never collected disability, although plenty of friends and family have suggested I should apply for it. I haven't been able to work because of seizures (SP, CP, and TC) and depression. BTW, maybe this neighbor of yours is bipolar also, because we look normal, too. Some of the brightest and most talented folks in the world are also bipolar. You cannot judge a book by it's cover, so you never know what this guy has been thru.

I'm with Valerie here, my first thought was of Stephen Hawking when thinking of someone who is severely disabled but extremely bright.

 

[niceguyVZ]

"I'm with Valerie here, my first thought was of Stephen Hawking when thinking of someone who is severely disabled but extremely bright."

Just because he is extremely bright doesn't mean we are all. I'm not.

 

[Cint]

"I'm with Valerie here, my first thought was of Stephen Hawking when thinking of someone who is severely disabled but extremely bright."

Just because he is extremely bright doesn't mean we are all. I'm not.

The point is, he is severely disabled but he didn't let that stop him. What is stopping you? Who says you aren't bright? Who says you need to be like Stephen Hawking?

 

[valeriedl]

The point is, he is severely disabled but he didn't let that stop him. What is stopping you? Who says you aren't bright? Who says you need to be like Stephen Hawking?

You beat me to saying this!!!! Thanks :clap:

 

[Dolores]

Isn't the question more about how much your disability (whatever it may be) controls your life and what you can do? Everyone has their own personal electrical storm going on in their head. I'm one of the lucky ones who gets mine under control by medication. But many don't have that option.

It can be incredibly hard for someone just to get thru the day. To hold up Stephen Hawking as an model doesn't really help. He was able to find away around it but that doesn't mean everyone has that option.

I guess I just don't think it's a fair question because we each have our own trials to overcome. What may seem simple to one person is an enormous trial for another. Yet you can't tell that just looking at them. You can't see their electrical storm.

I don't worry about how disabled I may be. I simply try to focus on the things I can do.

[ame="http://youtu.be/V2K80Cl91Pw"]http://youtu.be/V2K80Cl91Pw[/ame]

 

[Cint]

Everyone has their own personal electrical storm going on in their head. I'm one of the lucky ones who gets mine under control by medication. But many don't have that option.

It can be incredibly hard for someone just to get thru the day.

At one time back in the 90's, it was incredibly hard for me to get thru the day, due to seizures + depression + medication that my docs had me taking. No one could see my electrical storm.

I guess I just don't think it's a fair question because we each have our own trials to overcome. What may seem simple to one person is an enormous trial for another. Yet you can't tell that just looking at them. You can't see their electrical storm.

I don't worry about how disabled I may be. I simply try to focus on the things I can do.

The reason I answered like I did is I feel like I've had plenty of trials to overcome after going thru an unsuccessful brain surgery that made my seizures worse than before surgery. From CP to CP + TC. And then that brought on the major depression which made me suicidal at times. And the docs could not find a med for years to stop the seizures OR the depression. And then, to find a medication to treat the depression, the neuropsych started me on a med that brought on Type 1 Diabetes. So now I take insulin on top of all my other meds. So how's that for taking med after med after med? Like you said, we all have our trials to overcome, some are jsut worse than others. I still think it was fair. I don't focus on my disability either. I try to focus on the things I can do and that is what I was trying to do by focusing on someone like Stephen Hawking. At one time in his life he was "normal".

 

[Janus]

I have damage that most people even here have NO IDEA about. My brain injury is a whole other issue that is very debilitating also. The doctors finally said that it is best i stop work and go into early retirement. I barely make it in today's world. But i do make it. Many people feel that i use my problems as an excuse but they have no idea. I work my ass off just to hold shit above water on an average day so please do not talk about what you believe as 'not really disabled' . That can really hurt people.

 

[kirsten]

Valeried and others have expressed contentious opinions but they have the right to do so. We can't censor others' ideas just because we disagree with them. If that were the case, there would be no CWE forum. There would be no text on the internet past encyclopedic information. Nobody, as far as I can tell, has approached anyone, uninvited and directly, to tell them that they are not disabled--that would be another matter entirely. Valeried did not express her opinion and just leave it at that--she opened the topic up to hear other people's views. I do think that it makes for a healthy forum when people are free to express their opinions, no matter what they might be.

 

[valeriedl]

I have damage that most people even here have NO IDEA about. My brain injury is a whole other issue that is very debilitating also. The doctors finally said that it is best i stop work and go into early retirement. I barely make it in today's world. But i do make it. Many people feel that i use my problems as an excuse but they have no idea. I work my ass off just to hold shit above water on an average day so please do not talk about what you believe as 'not really disabled' . That can really hurt people.

Because the average person doesn't see you having a problem all the time then they will usually assume that there is nothing wrong with you. When they see a person that needs something to help them walk, talk, hear or see then they assume that they have a serious problem. This is why they think it's ok that they are on Social Security or anything like that.

When people have neurological problems it's hard for someone to know that they have them, especially if you don't let them stop you from doing things. There are many people who have never seen me have a seizure and since I can hold a conversation with them then I must not have any problems. They only think that you have a problem if it is happening to you 24/7.

If I were constantly on the floor convulsing then yes I do have medical issues. When I tell them that I usually don't have TCs only partials, and try to explain what they are and what happens to me when I have one, they don't understand. My brothers girlfriend has epilepsy and recently had a seizure in front of me. She usually only has semi partials and even I wouldn't have realized that she was having a seizure at the time, but she sure did!

She even lost her job because of her epilepsy. She can tell when her seizures are coming on and can stop what she's doing but that wasn't good enough for her boss. She's having a very hard time trying to find another job. Since it's only my brother that's bringing in money now we've told her that she should apply for Social Security because they are having a lot of trouble paying the bills.

 

[Janus]

Well said Valeriedl. You know exactly what it is like (and you're from Pittsburgh?) hehe.
I really feel for your sister in law. that is a very hard situation, sending positive energy that way now. I hope it all smooths out soon.

 

[knothing]

valeriedl if we were to put a poll and let people vote I bet that the former boss of your brother's girlfriend would be voted as disabled (mentally).

 

[Zolt]

All i can say, is i had a brain tumor a tad bigger than a baseball removed from me. 8 weeks later i was back at my job. Now unfortunately i have seizures every month or so. Lucky they normally stop at my shoulder in my arm. But none of this stops me from doing what i want to do or what i need to do. Granted i don't socialize as much as the average, but that is just me. I never get bored, i can always find wonder in anything that is presently in front of me. And with the internet, i can read for days and days. But i limit most thing to moderate form.

Do i feel disabled, no. Do i have a disability, in a way yes, but in my mind, No.

Positive emotions: Think positively and u will achieve and find ways to achieve where there was no way before. Think outside of the box, but don't forget to look back in every now and then.

Negative emotions: Thinking negatively will lead you nowhere, but to a bitter person in the end.

So much of life out there, to enjoy and live.

Search and you will find. Don't let disability keep you down or from finding your happiness.

Be curious about life and everything around you and then you will never have a dull moment.


iano: op:

 

[mspang]

I consider it being an on and off disability.

 

[Dolores]

I consider it being an on and off disability.

I felt the same way also. I use Dilantin to control my seizures. What I didn't realize is all the little ways my electrical storm &/or the medication that keeps it under control is messing with me & my head.

I've was diagnosed when I was 10 so I don't remember what it feels like to "be normal". I just figured everyone felt the way I did, brain kind of cloudy, short term memory most times just not there, etc etc.

And then an unexpected situation happened with my phenobarbital and I didn't have it for a week. When I finally got some I took a bit extra since there was none in my system and my head cleared and I could think. For the first time in like forever. Talked with my doc and he was amazed I figured this out and agreed to up my dose. And I feel like a new me.

All that time I knew I had to deal with my "less than together" brain. I just come out and admit to people when I've lost track of a conversation or can't remember the word I want or other things "normal" people handle easily.

All this time I've been dealing with that electrical storm which, while it doesn't get so violent as to cause a seizure, can make life really hard to deal with. Especially when you don't realize it's the storm causing the problem. I used to think everyone else could handle this so much better than I. Now I realize they don't have to deal with this at all (though they do have their own issues to deal with I am sure).

So I wouldn't call it "on and off" but rather "really on and somewhat on".

The electrical storm will never go away. So I've just learned to deal with it. And am glad I've figured out just how much the storm is affecting me.

Sorry to go on so long, guess I just had to vent.

Hugs :hugs: to all!