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Thread: Is My Experience Different?

  1. #1
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    Is My Experience Different?

    I grew up with disability (quad. Spastic CP with surgery related SCI; wheelchair user) and I wonder if this changes my outlook versus someone who grew up AB and became disabled.

    Let me explain: a few days ago a post went up which stated, “I am guessing that most people that are in wheelchairs only draw a disability check as I do…” (http://sci.rutgers.edu/forum/showthread.php?t=201997). I initially became angry at this assumption (as I have worked my entire adult life) but then I read another post which stated, “After 2 years and 27 days, I took possession of my new ZRA S2” (http://sci.rutgers.edu/forum/showthread.php?t=201852) and I began to really think about my life versus someone who becomes injured as an adult.

    As a child, I had every service and piece of equipment imaginable. Therefore, as an adult (went to Shiner’s as a child) I have never had to fight the insurance company to get what I want as I already have a history with various equipment. I cannot imagine waiting two years to get a piece of equipment I need but, if I had to, that would certainly hinder my ability to work.

    Furthermore, my outlook is different (I think). As a child, I had dreams but those dreams never exceeded my physical limitations (don’t get me wrong, I push myself to the limits). I cannot imagine having dreams and then having those dreams crushed by an SCI. Moreover, my daily routines, while laborious, are all I have ever known so they do not affect how I go about my day. They are built into my day and I have nothing to compare.

    I do not notice that people react to me any differently then they react to anyone else. What I am unsure of is whether this is actually true or just my perception (since I have no life “before” to compare to). Since I have been offered every job I have ever applied to, except the last one which I was not qualified for, I do not believe my disability has affected my career. Whether this is because of the job I chose (high school teacher) or something else, I do not know.

    I would be curious as to others’ opinions. Is it easier to grow up with a disability versus obtaining one later in life? Why or why not? Has your career been affected by your disability (whether a “lifer” or not)? Do people look at you differently? Thoughts? Feelings?

    E
    There is no such thing as a stupid question but there sure are a lot of inquisitive idiots. -modified from despair.com

  2. #2
    Senior Member lynnifer's Avatar
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    Stuck in the middle since I went paralyzed at age 12 - non-traumatic Transverse Myelitis. Released from hospital & rehab on my 13th birthday.

    I notice if I'm among people born with their disability, they seem a little more dependent and don't have as much life experience .. there are ALWAYS exceptions to this rule.

    I did not have a career I couldn't pursue nor did I have a spouse who left me or children to worry about.

    With some injured later in life - I find the whole gambit. Some who kick arse to some who just wait to die to some who never leave their house again to some who take advantage of every program out there as they believe they are 'owed.'

    Who knows ... there are AB people I could describe in this way too.

    It's awkward for me to meet someone on disability who has more function than I do ... unless they're living on LTD from a previous employ.

    I really, truly feel bad for those who are severely injured young and can't work ... that sucks totally.

    I think family support, finances and a lot of other factors come into play as well here.
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  3. #3
    They are two completely different cohorts by miles, IMO. That is being disabled for life vs being AB then disabled as a young adult (19 for me).

    Job issues are probably proportional to the competition level of different career paths and you're social presence (good luck becoming an I Banker or a real corporate power player if you weren't so before you were disabled... I know lots of disabled folks that were successful before their disability that picked up where they left off when they returned to work but few that truly made it really big with no previous reputation before becoming injured).

    I often point out to folks (almost proudly) that I have not been like this my whole life. I think it is a snub of sorts towards being disabled. Before, I was disabled I couldn't even come close to relating to someone who was. The only thing a lifer lacks is having experienced the AB'd perspective. What can you really do about it though? My AB'd perspective gives me insight but it hasn't gotten me out this chair yet and I'm still treated like a disabled person by the world.
    Last edited by Patton57; 10-01-2012 at 09:33 PM. Reason: bold and underline added

  4. #4
    It is shocking how differently you are treated when you are disabled than when you are AB. I was injured at 45, and it really is like I am a different person in the eye of everyone, including people who have known me for decades. It is one of the most difficult things to deal with mentally post injury. Don't take offense to this but I find a lot of people who have been disabled their whole life view life rather passively, a good example is the guy in another thread who thinks he can find some woman to teach him how to pleasure a woman. To an AB guy, it seems ridiculous but I guess if your whole life you have had PT and Occupational Therapy and people praising you for being able to put on your pants it may seem like a reasonable view of the world. To be clear this is not the disabled person's fault, it is the way people view us. As a 47 year old man who has had a fairly accomplished life to be praised by random people for the stunning achievement of going grocery shopping, I can't imagine having had the world treat me like that my whole life. At some point you have to buy into it, that your smallest accomplishment is some how a victory and I think that prevent people from reaching their actual potential.

    As to it being easier to grow up with a disability vs. getting one later in life. Perhaps someone who is at 47 has been disabled their whole lives may be better adjusted to their disability but I certainly wouldn't trade that 45 years of being AB for some piece of mind right now.

  5. #5
    In the end though, the only thing that really matters is have you always tried to do the best with what you've got (disabled or not).

  6. #6
    In my mind, the major cohorts (where experiences are very distinguishable) are:

    Lifer
    AB/Disabled (@15-30 years old)
    AB/Disabled (@40+ years old)
    AB/Degenerative Disability (@40+ years old)

    but then again we all have so much in common as well

  7. #7
    How can we expect able bodied people (ABs) or as a physical therapist I had many years ago termed TABs (Temporarily Able Bodied) to get it when we differentiate disability amongst ourselves?

    All the best,
    GJ

  8. #8
    Quote Originally Posted by gjnl View Post
    How can we expect able bodied people (ABs) or as a physical therapist I had many years ago termed TABs (Temporarily Able Bodied) to get it when we differentiate disability amongst ourselves?

    All the best,
    GJ
    I have no expectation of ABs to "get it", and we are different. We are all products of our environment. If you read this article: http://parenting.blogs.nytimes.com/2...-for-toddlers/

    An extrapolate that "too much praise" effect to someone's entire life, even into adulthood how can you say that a person who has been disabled their whole life is going to approach life as someone who has had a disability thrust on them suddenly later in life?

  9. #9
    Ithink It's True that the attitudes of those who are disabled from birth differ from those who become disabled latter in life, expectations of normal life isn't there this makes the cure mentality doesn't make sense to most of the people who are born disabled cure ourselves we are normal to our selves.

  10. #10
    I wish SCI or a disability on no one, but if there is an "advantage" to having it young it is the reasons mentioned by the OP.
    Having equipment as you grow and planning your life and career with what you can do.
    My husband had his SCI at 44 in 2008.
    He was a medical gas pipe fitter and installed furnaces and A/C as a side business.
    He could fix just about anything for anybody and was a helicopter crew chief in the army.
    In 20 years I've never seen him read a book,send an email or write a letter, but he is not ignorant.
    I'm pretty sure he is dyslexic and was never diagnosed.
    I have no idea if his health were better and his injury level not as high what he would do to find a job now.
    It is shocking how long people wait for equipment or even know what you need and where to get it with a sudden disability. Add the challenges of transportation or living in a rural area and people get stuck pretty quick.
    Not everyone gets good rehab or has a supportive family.
    Last edited by LindaT; 10-01-2012 at 11:24 PM. Reason: sp

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