Am I disabled now?


#1
Where does the concept of disability come from? What does it mean to be disabled?

People are a mixture of thrownness (Heidegger’s description of the state in which we exist), self-determination and circumstances sometimes outside of our control. Within this mix, no person alone can be described as being disabled; they are just being themselves. The term “disabled” arises only when people are compared to each other (including your past self compared to your present self). Physical and mental disability is considered a lack of ability only because another person happens to have that ability. We live in a wonderfully complex world full of individuals with unique skills and abilities. It follows that if disability arises from an act of comparing, then everyone is potentially disabled depending on whom they are compared to. For example, the athlete Usain Bolt is disabled compared to the swimmer Michael Phelps because he physically can’t swim as well as Phelps (and Phelps is disabled when compared to Bolt).

Everyone can be considered disabled.

#2
Do you not have any of your own opinions you could share?

I would much rather hear peoples own, real experiences or thoughts on whether or not they are disabled rather than a very dry theory.

I for one don't feel disabled as I am able to do my job the same as I always have, (just slightly differently).
I have a nice home, a lovely husband who loves me the same as he always has, 4 wonderful children and 2 adorable grandsons, a very rewarding job that I love that comes with huge responsibilities and stresses.

I think we can be made to feel disabled however by thoughtless people who can't bear to wait an extra few seconds whilst I struggle to get money out of my purse or those who constantly ask if I am cold !!!!

Being different doesn't mean you are disabled, but being treated differently often does!!

Caroline.

#3
Dear Caroline

Why don't you comment on the content of my posts? Do you agree that disability is an act of comparing? That if everyone can be subject to a comparison, then everyone is potentially disabled, therefore the division between people the word "disabled" signifies dissolves? If everyone can be potentially disabled then nobody is disabled. People are just being themselves.

I would be interested in hearing your views on my ideas and not on who you think I am. The personal attacks on me adds nothing to this forum or to other peoples understanding of Parkinson's

dr jonny

#4
Medical model
Under the medical model, disability is defined with reference to what is 'wrong' with the person: how they are thought to differ from the 'norm' that is accepted by society as a whole.
'Disability' and 'impairment' become interchangeable and are used to describe the 'medical' condition that someone is said to have.
In addition, with this line of thinking, everything that is experienced by a disabled person is seen as arising because of what is 'wrong' with them: she can't read that magazine because she's blind; he can't travel to this meeting because he is a wheelchair user.
It is a small step to then place the disabled person in the role of a 'victim', someone who has 'suffered' a misfortune etc.

Social Model
The social model of disability locates the problems faced by disabled people externally - in the way that organisations, for example, produce information that is not readily accessible to a section of society; in the travel infrastructure that does not make adequate (or any) provision for alternative forms of mobility.
So, under the social model approach, the individual is not prevented from reading a magazine by their blindness, but by the lack of readily available alternative formats.
The individual is not prevented from travelling by their use of a wheelchair, but by the lack of facilities at stations, on trains in buses etc, to accommodate his needs. And it is the lack of these accessible options that 'disables' the individual.

Looking at the social model therefore could suggest disability is created by our environment and other people.
Perhaps we could eradicate disability by altering perceptions and ensuring that the environment enables everyone to access it fully.

#5
Google is wonderful is it not?

#6
Hi Anne Bernadette

Haven't seen you here for a long time. Hope you are well.

So many people seem to have disappeared from this forum which is a shame. I suppose they have gone to some of the other sites where we can chat more easily.

I generally just come on here to look at the up to date research, there are so many things happening now it is hard to keep up. It is encouraging though!!

I forgot (momentarily) that I had PD recently and then when I remembered, was like a heavy weight descending on my shoulders . It would be lovely to go back to before I had PD, not having to worry about my poor husband having to look after me, he shouldn't have to do that.

Still such is life I guess.

Caroline
x

#7
Hi
If part of you doesn't work right your disabled.my daughter has cerebral palsey she's in a wheelchair.i tell her she is not disabled she is unable to do certain things like walk.disabed is broken down doesn't work at all.
John

#8
I think disability is a very emotive word. Taken literally is an inability to do something,There are times that I feel disabled people are made more disabled by challenging environments.

'Disabled go' is a scheme in many local authorities , it gives information about access to places within your area that have been adapted to meet the needs of people with all sorts of disability . Restaurants, libraries, theatres etc as well as outdoor leisure facilities.

If you look on line you may have this scheme in your area. It is a great way of ensuring that wherever you go you will be welcome with or without additional needs.
You might find it useful for your daughter potter?



Caroline

#9
I find the word "disabled" very divisive, creating a "us and them" mentality that can descend into prejudice and discrimination. I was trying to show with my post that there is no absolute definition of disability; ability is always relative to other people (in an act of comparing), no matter how "able" you are. Therefore, the division signified by disability is meaningless. Individuals are just being themselves.

I agree with Caroline that ability is partly determined by our environment. The urban environment is designed with an "average ability" in mind and those that don't fit into this category will find it difficult. It is only recently that the urban landscape has been adapted and is slowly becoming more inclusive.

dr jonny

#10
We are not only disabled by environments, in my view, but by people and perceptions.

I went into my neuro appointment as a normal,healthy,articulate, intelligent woman and emerged as a patient, an NHS number, not to be taken too seriously, certainly not important enough to be listened to.

What happened during that half an hour?
Did I change who I am?- no.
Did I become less intelligent? - no.
Less articulate? - no

Is it my own perception of myself as disabled now I have PD or do I see myself that way as a reflection of how I feel others see me?

Caroline.

#11
Dear Caroline,

I am unsure if I am posting this in the correct thread. Please forgive me if I have made a mistake.

I believe that you mentioned that you were interested in the research aspects of our mutual condition.

I received a communication about this. Professor Wolpert ( Cambridge University Neuroscience Department) argues that we have a brain for one reason only: to produce adaptable and complex movements.

Some other boffin , whose name escapes me, states that brains must have evolved to enable the organism to survive and that this requires more than muscle control. His proposition is that the purpose of a brain is to predict the future i.e. a a particular sequence of of movements aids survival, others do not.

So us pwp have been dealt a double whammy. We can neither control our movements nor are we psychic.

To add insult to injury. the reseach document states (in very small letters) that it has no clinical relevance!

#12
It appears from other research that PWP are often in stressful jobs, perhaps the development of this condition is related to cortisol levels in the brain.

Normally, cortisol is present in the body at higher levels in the morning, and at its lowest at night.Could this explain why many peoples PD is worse in the mornings?

I have been told I have idiopathic PD (unknown cause)but maybe those of us who thought we thrived on stress are, in fact, at greater risk of developing Parkinson's as a result.

I have an aunt who was, before retirement, a senior cardiac nurse,She used to shake the whole time, as though her whole body had a slight tremor. I have, since Dx wondered if her tremor and my Parkinson's are linked in some way.


Caroline

#13
Hi

'ACTH and cortisol plasma concentrations were also consistently lower during most of the day in the patients with Parkinson's disease. These data confirm the presence of a hypothalamic disturbance in patients with idiopathic Parkinson's disease, which can affect pituitary function.'

http://link.springer.com/article/10.1007%2FBF00319704?LI=true (21.12.12)


Weird what you can find when you look. It appears there is an anomaly between cortisol levels and PWP.

Caroline

#14
Dr jonny, I found your posts interesting. I have been diagnosed for just over 2 years. I have felt a mixture of shame and self pity about this, to the extent I have only told a few people. I think this is partly because of the way I think i will be viewed by people, I don't want to be pitied. Is that because I feel they will think less of me ( that's rhetorical), probably. I don't know why I feel like this. I feel embarrassed when my arm starts to shake.

I agree with you entirely about the term disabled, I had a problem with the Olympics and the fact that there are para-Olympics, surely there is a way for it to be one Olympics?

So, cheers for your thoughts,( I've decided to go alcohol free in January, to see how it will affect me, so this will be my last glass of wine!)

Happy new year and I look forward to more shared thinking!

#15
Hi valerie

Thank you. Happy new year to you and your family! Good luck with the new years resolution!

I've been thinking about what you wrote. It seems to me that feelings of shame about Parkinson’s are based upon a sense of responsibility for the condition you are in (or your inability to change it). However, there is a difference between having something and being responsible for that possession. For example, you had two eyes when you born but you didn’t consciously choose to have two eyes. That part of yourself just is. The same with Parkinson’s; you (or anybody else) didn’t choose for you to have Parkinson’s. Therefore, if somebody judges you for having two eyes (or Parkinson’s disease) you know that such a judgement is absurd because it judges nobody.

Shame is usually felt in the context of other people and what they might be thinking of us. We can’t do much about the views of others, they are free to think what they like. You may have the juiciest, best tasting apple ever grown but when you offer it to somebody they refuse to take it; some people just don’t like apples!

Shame is also felt in relation to ourselves and what we expected to happen. But at least we can effectively challenge our own thoughts. For instance, shame can understandably lead us try and hide our Parkinson’s in an attempt to confine and control our feelings of shame. Telling other people risks loosening that control, like releasing a kite on a windy day for all to see. It must be a personal choice whether to fly the kite. You may encounter positive, negative or indifferent responses. The opinion of others doesn’t have to dictate how you see yourself. The important thing is how you respond to their response. I found trying to hide my tremor exhausting and people noticed it anyway. I prefer to be honest and open about my Parkinson’s to remove any uncertainty in the people I meet. I think I’m able to do this because I know I’m free to react in any way I want to their response.

All the best for 2013!

dr jonny

#16
I too told everyone about having PD, some on the day of diagnosis and others , when I saw them.
The responses were a mix of shock and horror apart from my wonderful Mum who commented " That's a nuisance"lol.

I didn't want to hide my symptoms as it doesn't work anyway and the added pressure of trying, makes it worse anyway.If I meet new people in the course of my job, I tell them when I can (obviously not if they are still reeling from their child's' diagnosis of Autism.

My employers (LA Education dep't) have been so helpful, providing me with dragon software, Dictaphone, new PC and a new roller ball mouse, following the advice of the 'access to work scheme'. They have made it clear they will do whatever it takes to keep me there, which is very flattering.

My colleague however, had a stroke, which left her with Epilepsy. She has not yet (after 2 years) accepted this or sought help and is on the verge of losing her job as a result. She is making mistakes which could be avoided if only she would accept / ask for help.

I guess the question is how can you make someone accept what has happened to them before it gets to the point where it is destroying their future.

#17
Thanks for both your replies,. I think that's the value of the forum being able to get views from people in the same position. What you have both said makes me look at my own situation and question my feelings! I am quite a positive person so I don't particularly get down about it. I think having to take medication 3 times a day forces me to have to focus on it more than I would wish.

Anyhow, a new year and best wishes to all.:astonished:

#18
I find that when I'm applying for a job, for instance, I'm disabled. However, when I'm applying for benefits I'm not disabled. So, disability is a tag that is applied to PD sufferers by others for their own convenience and ulterior motives and is no reflection on the person to whom it is applied.

#19
yeah your right Innominate.. :-)

#20
When I was visiting the hospital recently I was presented with a walker and a seat for the shower. I promptly began to shed tears abd declared that I didn't want to be " disabled"! The physio said that if I fell and cracked my head again I certainly could be worse than that and as far as the equipment was concerned that didn't make me disabled, it made me "enabled".

I decided that I would find out what else I could get to make me even more enabled. Now I have access to "disability" car parks, A "high user card" (for cheaper meds), People make room for me and my Range Rover(aka my walker) to pass by them at the supermarket and i get smiles from one and all as a shuffle along out and about. 3 year old grandaughter calls my walker "Grans Pram" and a young teenage boy called out" Hey lady, cool scooter" and grinned"

Maybe this new image isn't so bad after all.

Toots