I am limited, but there is still a lot of things I can do. I can totally take care of myself. I may struggle with carrying heavy things and walking long distances. But I can do a bunch of other things, like feed myself, bathe myself and wipe my own ass. I don’t see myself as handicap even though I have a placard for my car 😄. It comes in handy after walking through the grocery store. But I am not fully able bodied. So when there are others like me, I can understand the struggle. I can empathize. I can nod my head and say, “I know right.” I read an article the other day that put me in my place.
This article was about a gentleman, Steve Way, who was born with muscular dystrophy. He cannot do anything for himself. He is totally dependent on others for his every need. He needs 24 hour assistance. Now technically we are both considered to be handicapped. We both have placards. But we are so different. There is so many levels to this shit. And his story made me realize I am not doing enough.
Steve Way had to move out of his parent’s home due to someone in the house contracting Covid-19 and he is in the vulnerable population. Now he lives with his girlfriend and she works because they have to keep a roof over their heads. The thing is he no longer has someone there 24 hours to assist him. He asked Medicaid can he get additional nursing hours to cover the time when his girlfriend is at work. Do you know they denied him? They said he is not disabled enough. Huh?!?! I’m confused as hell. Remember I said he can’t do anything for himself. So how much more disabled does he need to be?
I have said this before that I am MS prejudice because I want to keep my rose tinted glasses on. I don’t want to see people who are worse off than me. It is for my protection. I don’t want my mind to start thinking about the what ifs. To then go on to dwell on them. I know how my mind works. It can get ugly up in there. But how fucking selfish have I been. Like seriously. Uhhh…Ebony!
Yes, I may not be there yet. I may never get there. Who knows? But would I want an ally in my fight, hell yeah! I would want someone that can advocate with me and for me if I am unable to do it for myself. Someone who will not just stand beside me, but prop me up when I am weakened in my fight. I know people think that the world has come so far where limited and disabled people are concerned. It has gotten better since the 80s. But for them to deny Steve Way for not being disabled enough, means there is so much more work to do. It means that people are truly not aware.
I think that everyone would benefit from knowing someone with a physical or mental disability. It shines a different light on life. On how the world looks. To see it through someone else’s eyes. I see the world differently based on my limitations. Then to see the world based on Steve’s limitations added a whole different perspective. Now I want to go beat people up for him 😄.
I need to start finding ways that I can assist in this fight. What committees do I need to be on? What foundations do I need to volunteer at? What can I do to be an ally? Ask yourself the same questions. How can you be an ally? How would you want someone to show up for you? Let’s do this! Let’s help others to be well and whole as we continue to be well and whole. Much love 🧡💚
Here is the link to the article that featured Steve Way.
https://www.gq.com/story/steve-way-dating-while-disabled-modern-lovers