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Help With A Definitive Study Re: Psychological Effects

LIONHEARTdisability

This is a rather long post - I apologize - but I promise, I don't believe it's silly or self-indulgent!
I want you to have some background to better understand my request!

Dear Hannah,

My name is Chris Traynor and I live in northern New Jersey (USA). I became disabled (lost mobility, use a chair, have bad chronic pain and other issues) about 12 years ago (age at the time was 42). I've had a long struggle - emotionally, psychologically and spiritually - with the "transition" from able-bodied to disabled. I'm an introspective person and so I observed myself (if that makes sense) and did a lot of self-reflection.

When I looked back on the long time I was in hospital/rehab, I realized that never once was I part of any counseling (prophylactic, if you will) to heighten my awareness about the wildfire of emotions I would be confronted with once discharged. While counseling would NOT have necessarily done much to prevent this inner turmoil (which, of course, also affected my family ... who should have also received some counseling/guidance), I believe it would have helped me in a variety of ways - including cluing me into the fact that A() I wasn't alone and

I wasn't crazy and that C) extraordinary reactions to extraordinarily traumatic changes is quite normal.

Long story not-so-short (sorry), I decided last year to work on a program/workshop that I could bring out to the disabled, as well as caregivers and healthcare professionals that would delve into this "trauma" and, hopefully, bring awareness and insight to the issue AND provide a "language" to help people express their feelings (as well as explain to caregivers what their "charges" are going through (perhaps lessening the tension that can develop particularly when that caregivers is a spouse or family member).

The workshop is called "unBECOMING" and the name of my little boutique organization is
LIONHEART Disability Transition. Slogan "The Hell, Hurt & Heroics of Disability".

I don't know if you're on TWITTER at all but if you'd like, you might enjoy what I post ("at" symbol) LIONHEARTpwd under the brand "DISABILITY EXPRESS" (as in an EXPRESSion of honest information about its personal challenges). You're more than welcome to Follow me there!

HERE'S MY QUESTION TO YOU AS AN EDUCATIONAL PSYCHOLOGIST (which I'm hoping if you don't have access to the information, you might be kind enough to pass my query around to colleagues who might lead you (or me) to the location of this "knowledge." Here goes:

I'm a pretty good researcher but after a full year of searching I'm beginning to conclude that "the disabled" are criminally understudied and/or under-discussed! I want my program to be solid and based on the truth. Where possible, I'd like to eliminate any "soft opinion" if there's empirical evidence out there which I can share.

I am trying to locate either a definitive study (or several small semi-definitive studies from which wisdom could be extracted) on the PSYCHOLOGICAL EFFECT OF DISABILITY. I will be talking to people who've suffered "onset disability" like me (injury/illness) but I'm imagining I will also be interacting with folks dealing with progressive conditions that they acquired earlier in their lives (perhaps congenital conditions). I wouldn't quibble too much if the framework of the disability studied was a bit fuzzy - at this point, I'll take anything that will help guide my discussion.

I'm hopeful, if its supported, to be able to say "Some 62% of people impacted by disability report depression or anxiety or a bad case of "hives" or the sudden appearance of a second, fully functioning head on their lower back!"

Perhaps theirs a study that might indicate the approx. length of time required for a disabled person to regain their sense of self? I'm wondering if its possible these studies do exist but they're locked away within professional association forums to which I have no access????

I think SCOPE is an amazing, progressive support structure (wish you were here in the States) and my hope is amazing people would gravitate to an amazing organization ... making you the kind of person who might see this query as having enough meaning and possibility to put a little of your time into helping me (or sharing my query/predicament with colleagues who might hold the key.

If you've read this far, I thank you - heartily!
I thank you also for your kind consideration.
Be well.
Chris Traynor
ctraynor@whip-smart.com
cell US 973.831.4274
Wayne, NJ 07470 USA
(at)LIONHEARTpwd

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Comments

EducationalPsychologist

Hi Chris, thank you for your post. I would recommend you contact the following organisations who may be able to let you know about uk research:
www.bps.org.uk
www.hcpc.org.uk
www.achippp.org.uk

Best of luck!

nanof6

hi criss, ive been thrown in at the deep end, and been left to drown, ive been told nothing can be done, given a wheelchair, bye, i have been in a state of shock since,May june, its been worse than when i lost a family member.ive been to see a concerler, but its not working, i cant find anyone on this site who it has happened to, to talk to.i think that is what i need.im now worried, i have a wet winter trapted in my house or i get a soaking when i go out, if, i go out i just dont no what to do.im just so shocked about this.

LIONHEARTdisability

Dear "Nanof6"
Can you share with me your first name, your geographic home (just general, if you'd like) and some details about your journey that got you to this place, right now?

Also - DO NOT FEEL ASHAMED - there is a 5-Alarm Fire burning (right now) out of control in your mind, body and soul. You should be "out of your head" and "beside yourself." That doesn't mean you should go wheeling/streaking down the street, screaming "Donald Trump and Walt Disney are battling for possession of my soul!!!!" but it does mean that what you're feeling is more than appropriate.

Please, share some of your story.
Best Thoughts,
Chris Traynor
Northern New Jersey, USA
If you can sign up to Twitter - please do - use hashtags like #disability #wheellchair #pwd (people w/disabilities), #newmobilitymag
You can follow me by searching for (at)LIONHEARTpwd (Disability Express)

Footloose

Hi Chris.
I'm from Reading, Berkshire - UK ... not the USA !!! My Name's Sam, I'm male, 67 and born with two disabilities, one being Spina Bifida (which in a strange kind of way, I'm proud of) and another which I'm ashamed of. Both of these disabilities are pretty-well 'Invisible', so I have been left with the turmoil of feeling 'different' to everyone else. Later on in the 1990's, I ended up with problems with my legs, landing me in a wheelchair most of the time, which led me feeling even more 'marginalised' than I was before. I've known a fair number of people who have become disabled, and generally, I would say, the majority of these people feel the 'emotional pain' more acutely than those who always have been ... In a weird kind of way, if you are born with a disability, it's kind of 'Assumed' you have or will come to terms with it, because you can't look back to a time when you weren't disabled!

I like you, think that the number of Psychologists specifically catering for people with a disability - outside of a Rehab centre, are very thin on the ground. Maybe this is because it's considered the 'Cinderella' of this particular area of specialisation, or that the general consensus of opinion is that once people have exited a Rehab centre, there's little demand for them - Possibly because many disabled people are too ashamed to own up to needing it. I think if you contacted disabled ex-Forces personnel you would very soon discover that they have quite a story to tell about how well treated they are treated, post-rehab ....

LIONHEARTdisability

I'm so sorry that I didn't reply to this post - I don't know what happened. I'm not a rude person but somehow I just didn't touch back. Again, I apologize.

I just want you to know that one of the things you wrote - I feel - was very profound:

In a weird kind of way, if you are born with a disability, it's kind of 'Assumed' you have or will come to terms with it, because you can't look back to a time when you weren't disabled!

I want to thank you for that insight. I hope you find a way to share it with many others! Feel free to reach out to me on Twitter lionheartpwd Best, Chris