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"What should I do about my family's embarrassment towards my disability?"

Chris_ScopeChris_Scope Posts: 695Member Pioneering
edited September 2016 in Disabled people
In addition to the challenges of living with a disability, the attitudes of other people can present extra difficulties. We came across the following in an online forum...

"I’m a partially sighted male and have a symbol cane.

I heard my sister say that she, my other sister and my 8-year-old nephew saw me out and about with it and found it “embarrassing”. My other sister has two kids and when I heard my sister say that my 8-year-old nephew found my cane embarrassing it should have been up to my sisters to explain to him that he has a sight impaired uncle and that I need that cane and that there are many people who are different to him.

Any help greatly appreciated."

 What would you say to this person? Can you offer them any words of support for us to share with them?


Replies

  • basiclee08basiclee08 Posts: 71Member Courageous
    With kids I find taking a awkward moment and using it to teach and can be fun at same time. Buy some chocolate buy a blindfold and a garden cane let them see chocolate at end of garden ask them to put blind fold on and try to find chocolate keep kids occupied and a insight into being partially sighted and awkwardness gone.Adults that's another thing watching you do this may inspire them. Hope suggestion Helps. 

  • CrissyCodingCrissyCoding Posts: 6Member
    I like the idea about the chocolate for the kids. Even with the adults, if you can get them to agree to be blindfolded for 30 min and do what you do. Try to get around their home, make a meal, take a shower. See if they can build respect for the enormous feat you live from day to day with courage. Instead of being embarassed, they should see you like a superhero. 
  • bambam Posts: 331Member Pioneering
    My dad was embarrassed because I have MS and also because my brother is autistic. I didn't hear my dad talk about my brother my entire life. When I was at his memorial service after his death I talked to some of his friends and they said he told them that I didn't have MS. He would just tell them I was just lazy
  • CrissyCodingCrissyCoding Posts: 6Member
    Have you ever spoken to your father to ask why he preferred a "lazy" child instead of "disabled" one? Often times, our behaviors comes from a place deep within and from earlier in life.
  • bambam Posts: 331Member Pioneering
    No I never had the opportunity speak my dad about it. I found out about him tonight I have MS at his memorial service. He told people I was lazy because I had problems working because of my MS. He was embarrassed that his son had Ms and was unemployed. I wish I had the opportunity to speak to him about it.
  • CrissyCodingCrissyCoding Posts: 6Member
    Oh I see. How are you coping with your disability at this point? Or I guess the better question is how do you view yourself? 
  • bambam Posts: 331Member Pioneering
    Well, I don't really know how I view myself now. It seems like my whole life is MS. I'm lonely and it's hard to meet people when you're sick and disabled. A lot of people don't want to associate with anybody that is sick or disabled. it's almost like they're afraid they're going to catch what you have. I'm just so tired of talking to doctors. They ask me the same questions every time I see them and it's never the same doctor 
  • CrissyCodingCrissyCoding Posts: 6Member
    I can relate to a small degree. I have Sjogren's Syndrome. And while it doesn't inflict the same degree of disability on me as does MS, I spend plenty of time at doctors and laying in bed. I talk with friends about how I'm feeling at times, but it's usually at night that is the hardest when no one is awake. At those times I think about what it says in the scriptures that God knows even how many hairs are on our head, he understands us better than anyone could. So I pray, telling him not just that I have pain, but how lonely it feels at that moment and to please give me strength to push on to the next day. Are you comfortable praying, reading, or listening to the Bible when you feel low like that? 
  • bambam Posts: 331Member Pioneering
    Yes, nights are terrible for me too. Sometimes I just lay in bed and I can't stop thinking. It's like I can't shut my brain off and no one's awake. How do you view yourself?
  • CrissyCodingCrissyCoding Posts: 6Member
    I have several things I meditate on. I was a caregiver for my disabled brother who has now passed away. He was unable to walk, talk, or use his hands. He smiled and laughed all the time though. He was aware of what was going on around him and even of his extreme limitations, but it helped me realize all that I still can do. It may seem small to many people, but feeding, clothing, bathing, scratching if you itch things to be happy about being able to do yourself, when like me you have seen the dignity it  an strip away from those who can't.

    Also I spent so much time focusing on my weaknesses, that I forgot how strong I am. To have a disease for such a long time and continue functioning day and day out and still maintain some level of joy in life takes great courage and strength that not many people can manage. I'm proud of that. 

    Of course I have down days, but overall I'm proud to be me. I'm not defective, just different. Think of it this way, I'm short. So I guess a tall person could be considered defective from my point of view right? To be honest God is perfect, so from his point of view the whole human race is defective since we're all imperfect. So you're among friends no matter where you go. 
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