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Working, The Stigma of Not Working & Disability

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    Working, The Stigma of Not Working & Disability

    Anyone else with a spinal cord injury who is on SSDI and is not working feel a stigma for "not working"?

    I often feel this way. Unfortunately it's just another thing to feel negative about. It's probably as the result of being influenced like others from a young age by the pressure to work, support yourself and not be one of "those people" who are on Welfare. There's also the common sentiment that people on federal disability insurance "don't want to work"...

    Between not being able to find the right job, the bad economy, issues with personal care and having the level of assistance that would enable me to get up early every day...I haven't been working.

    ----
    c4/5, 17 yrs since injury
    C4/5 incomplete, 17 years since injury

    "The trick is in what one emphasizes. We either make ourselves miserable, or we make ourselves happy. The amount of work is the same.” - Carlos Castaneda

    "We live not alone but chained to a creature of a different kingdom: our body." - Marcel Proust

    #2
    I don't feel a stigma from others for not working, but I do wish that I was still working. I had to stop working 4 years ago due to recurrent health issues. I miss feeling productive. I miss feeling that I was contributing to society. I miss the routine and regular interactions with co-workers. I am hoping that I will be able to acquire an affordable vehicle soon so that I can at least volunteer on a regular basis. I m 34 years post injury and can't imagine returning to full-time work. I would love to work part-time and continue to pay into the system, but it seems too complicated to work just part-time and keep any sort of medical insurance benefits.
    Last edited by peegy p; 13 Nov 2012, 12:49 PM.

    Comment


      #3
      I hope its OK for me to reply since I don't have a sci. But I definitely feel a stigma. Not from others but from myself. I hate being unable to work and am ashamed and mostly unwilling to admit it. For example my Facebook page still lists me as a riding instructor, despite it having been a couple years since I last worked.

      I'm not yet on ssdi but have applied. My drs have told me how stupid it was to wait so long to apply. I wanted to work and was in denial about how long it would take to get back to work. I'm probably very much still in denial, as I'm trying to go back to work or school through voc rehab but hold my breath afraid they will deny me and say just stay home on the basis of my limitations as written by my drs on the forms.
      Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

      I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

      Comment


        #4
        Originally posted by KyleP2112 View Post
        Anyone else with a spinal cord injury who is on SSDI and is not working feel a stigma for "not working"?

        I often feel this way. Unfortunately it's just another thing to feel negative about. It's probably as the result of being influenced like others from a young age by the pressure to work, support yourself and not be one of "those people" who are on Welfare. There's also the common sentiment that people on federal disability insurance "don't want to work"...

        Between not being able to find the right job, the bad economy, issues with personal care and having the level of assistance that would enable me to get up early every day...I haven't been working.

        ----
        c4/5, 17 yrs since injury
        If you really cannot work right now, don't worry about it.
        2012 SCINetUSA Clinical Trial Support Squad Member
        Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature.

        Comment


          #5
          As an American it's hard to extricate your self image from your status as a working person. I do think it's critical as an sci person to work on this. Some are lucky and have relatively few side issues like pain, recurrent skin issues, bowel problems, etc. Others are plagued with these side issues which preclude work. I was extremely fortunate that as a T-10 para I had no significant pain issues, no skin problems, a bullet proof bowel program. This enabled me to work 30 years post injury. At one point I figured out that I was using less sick leave than almost anyone in my office. However, I worked with a good number of sci people who desperately wanted to return to work and could not. I remember one para who just could not keep his butt sore free. He would do well in college for a couple of semesters then would have another breakdown and spend months in bed healing a sore. Imo, it's essential that you decouple your self image from work. If you are able to function relatively free of these side issues with sci, then thank your lucky stars every day you get up able to go to work or school despite the burdens that come with sci as your good fortune may only be temporary.

          Comment


            #6
            Don't let your politics make you feel guilty. The programs you're on were specifically created for you.
            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

            Comment


              #7
              all in your head kyle

              Comment


                #8
                It is understandable, as a product of our culture, to feel that if you don't work, you are a drain on the economy. That is certain the (R) view on this...

                Kyle, if you want to feel that you are still being productive, have a reason to get out of bed/the house daily or nearly daily, and feel fulfilled, consider volunteering. There are tons of things you can do in your community working as a volunteer for a wide variety of non-profit programs. Direct visitors at a hospital. Teach kids (or adults) to read. Read to kids at the library. Tutor. Do telephone grief counseling for a hospice (my mother did this for years as a retired nurse). Answer phones for you local ILC. Volunteer work is just as legitimate a contribution as work for money (maybe more so).

                Lin, if you go on SSDI and later are able to work, you can apply for Ticket to Work for a trial work period before loosing your benefits. Get some information about this program. Are you working with DOR or other vocational rehab counselor?

                (KLD)
                The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                Comment


                  #9
                  Volunteering is a great suggestion, and if you're able to post here you're able to offer something in volunteer work. I help with rescues and will type up educational materials, handle emails and coordinate events, work on petfinder ads or websites etc. So it can even be done from home.

                  What's DOR? I have a vocational rehab counselor but its been difficult reaching him. I started back in April and am still pretty early in the process. When I faxed them the drs forms I never heard anything and didn't get replies to my emails or calls at first. I finally reached his secretary by phone who said she couldn't find the paperwork and please Refax it. No problem, I did, but when they finally scheduled my next appt it was a full 2 months from that point on Oct 31. Then they canceled that appt due to medical emergency. It happens, but God I hope its not another two month wait. I'm still waiting for my new appt date.
                  Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

                  I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

                  Comment


                    #10
                    Originally posted by ~Lin View Post
                    What's DOR?
                    DOR = Department of Rehabilitation (sometimes called DVR = Department of Vocational Rehabilitation). State program.

                    Call the VR counselor's supervisor if you are not getting any attention/action on your case.

                    (KLD)
                    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                    Comment


                      #11
                      I think it's crazy feeling guilty for not working with a spinal injury. Only you know if you're capable of doing so. And I doubt any body feels that you should be. I work because I like a certain standard of living where I could not afford if I wasn't working. I went without health insurance most of my adult life because of it.

                      Comment


                        #12
                        Lots of great comments.
                        C4/5 incomplete, 17 years since injury

                        "The trick is in what one emphasizes. We either make ourselves miserable, or we make ourselves happy. The amount of work is the same.” - Carlos Castaneda

                        "We live not alone but chained to a creature of a different kingdom: our body." - Marcel Proust

                        Comment


                          #13
                          Thanks for the kind words Rainman. I don't know if others have dealt with repeated pressure wounds but I'm wondering if the cost of working and getting up early and sitting 12 to 15 hrs each day, five days a week...will be more pressure wounds? Though I haven't had a wound in about 2 years +, I've already had four surgeries or wound closures/flap surgeries on the right side of my rear.
                          C4/5 incomplete, 17 years since injury

                          "The trick is in what one emphasizes. We either make ourselves miserable, or we make ourselves happy. The amount of work is the same.” - Carlos Castaneda

                          "We live not alone but chained to a creature of a different kingdom: our body." - Marcel Proust

                          Comment


                            #14
                            Originally posted by KyleP2112 View Post
                            Thanks for the kind words Rainman. I don't know if others have dealt with repeated pressure wounds but I'm wondering if the cost of working and getting up early and sitting 12 to 15 hrs each day, five days a week...will be more pressure wounds? Though I haven't had a wound in about 2 years +, I've already had four surgeries or wound closures/flap surgeries on the right side of my rear.

                            Kyle, I would do what's best for your health. No one is going to look at you any differently. Just dealing with being a c4-5 is more then anybody could ask for. Money does give you some comfort, but it's not worth risking your health.

                            People treat me the same if i'm wearing a company shirt or not. No one judges obvious disabled people on their ability of working.

                            Comment


                              #15
                              I feel judged. Possibly b/c I'm so incomplete an sci.Only when you factor the Graves disease in does my full-term disability seem justified to me. I did pay in to ssdi for yrs. 80% of hub's SS due to being disabled widow under 50. I'm not rich, but it is dirt cheap where I currently live.

                              And sold house in OK for fair price, so now only 1 set of bills!

                              I always worked. I'm incapable of my former job, I lack the dexterity for microscopes and needles and test tubes. Should go back to school but in this economy what's the point?
                              Blog:
                              Does This Wheelchair Make My Ass Look Fat?

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