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None of us choose to have ALS, so how can we be proud?
Did you know that last month (July) was Disability Pride Month? Did you feel any “pride?”
Ben Hofmeister, who has MS, wrote a column that caught my attention. He expressed the frustration I believe we pALS feel about our disability – – and he finished the column with a new perspective.
Do you share the same feelings as Ben? How do you feel about referring to ALS as a disability?
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4 Replies
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I’ll admit that I’m still uncomfortable referring to my ALS as a disability – – I consider it more of “condition.” But I am proud of the strides and advancements made to public spaces that accommodate those of us who “move differently” and have different needs.
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This is a good discussion topic.
I wouldn’t say I’m proud of having ALS. Getting ALS had nothing to do with what I’ve done or accomplished. I would say that I am proud of the way I have handled having ALS. I focus on staying positive and I continue to advocate for pALS. ALS is just something I live with….It does not define me.
I am also very proud of all the research I have volunteered to participate in. I’ve volunteered for so many studies I can’t keep track. I feel that I was put in a position to help by being born with this genetic mutation causing ALS; so, I consider volunteering “my gift to ALS research.”
I’m proud of being part of this community where we support and help one another — So, yes, ALS has given me a lot of reasons to be proud.
Amanda
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BRAVO Amanda! 🙂 I’m proud of YOU!
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I talk about ALS as a disease that is the cause of my disability. I’m very happy for the progress made over the years by the many advocates for us. I would not I am proud though. I would rather it be called disability awareness or even disability advocacy month as this would lend itself to more action.
I do what I can to raise awareness and fundraising to help our cause. My mantra is to not hide what is happening. The more everyone understands the better!
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