August Is SMA Awareness Month

[kevin-schaefer]

Great point Michael. I think awareness does mean different things to different people. For me, it’s about connecting with other people in the SMA community and other people with disabilities, and also to show others that we’re just people with different challenges. We have lives and aspirations just like everyone else, and we just do things differently.

Thanks for bringing this up.

[michael-morale]

Excellent point Kevin. Our SMA doesn’t mean we CAN’T do it, it means we do it differently.

[mike-huddleston]

Well, forgive me in advance as I’m typically a little cynical about these type of things.  But I’m also a 40+ year patient, which is a bit longer than many here have been alive.  IMO, our compassion for others is what this kind of thing is about, but those of us with a disability seem to already have a certain amount of that as we know what struggles we have, so we have an appreciation of the struggles others may have.  So maybe or maybe not compassion, but certainly empathy.  And that’s not limited to others with SMA.  If I wear an SMA shirt or whatever, some people may ask, but too often a number of people don’t take the time to be informed or ask.  That doesn’t bring any more awareness to the fact that I’m “dealing with something” that isn’t already pretty clear because I use a power chair.  I don’t fault them for that, but a lot of folks are too wrapped up in their own world or bubble to be bothered.  Getting beyond the thought “Dude is in a wheelchair” doesn’t happen for a vast majority of people.  I’m not here to educate them, and won’t go out of my way to do so, but I will talk with anyone who shows an interest.  I’m busy, just like they are.

That being said, I don’t want anyone’s pity.  I’m 55.  I’ve worked full time since I was 17.  I’ve now worked for the same company for almost 32 years.  And I still get, “Wow, good for you!” or “What an inspiration!” when I respond in the positive that, “yes, I still work.”  I mean, seriously, I have a mortgage and bills just like so many others and am just trying to navigate my way through this life just like so many others.

In the meantime, I suppose I shouldn’t wait for any “Happy SMA Awareness Month” cards, right???  😉

[kevin-schaefer]

Mike, I can totally relate. I actually wrote a column a while back on this exact subject: https://smanewstoday.com/2017/06/13/sma-i-hate-it-when-people-call-me-an-inspiration/?amp.

Heck, I even have extended family members who are surprised when I talk about my job and that I work full-time. I’m like, I didn’t go to a 4-year college for a piece of paper and a pat on the back. It can be frustrating being a disability advocate and trying to counter all the pity-pandering and bs disability stereotypes. I feel sorry for people like the one Michael mentioned. They’re the ones who live in a bubble of ignorance.

[mike-huddleston]

Thanks for posting that link, Kevin.  I haven’t dug through all the archives but there is a treasure trove here.  What a well written article.  I would say, “you’re an inspiration”, but not sure how you’d take it?  Buwhahahahaha.  Sorry, yes, I had to go there.

[kevin-schaefer]

Thanks Mike! And haha no worries. Like I said, if my writing inspires people then great. But you and I both know how irritating it is when strangers marvel at us just for being out and living normal lives. It’s ridiculous.

[kevin-schaefer]

Hey Mike, hope you’re doing well.

I’m just commenting here, because I got a new classic ableism comment that was said to me on Friday. I went in for physical therapy, and as I was sitting in the waiting room with a friend who drove me, this woman came up to me. Maybe I have a sixth sense about these things, but I could just tell she was going to say something ridiculous. Before even asking my name or anything, she looks at me and says “So do you hope to not have to be in that wheelchair one day?” The lady was at least in her 60s or 70s, but apparently lacked the common sense of a five year-old.

I politely said that I’ve lived with my disability for my entire life, and that being in a wheelchair doesn’t bother me. Fortunately, one of the assistants at the clinic who I talk to regularly walked by a minute later. I went straight to talking with her and ignored the lady until she walked away. My friend and I talked about it a few minutes later, and he was beyond appalled that someone would say crap like this. I told him it happens quite often, and I told him about the two guys who tried to heal me a few years ago in the middle of a movie theater.

I’m used to politely ignoring these people and waiting for them to go away, but I need to get more snarky. I told my caregiver about it, and we came up with some good one-liner responses for this question.

-“Well I hope not. It would put me and my caregivers out of work immediately.”

-“Well I hope not, because then I’d have to spend money on shoes instead of comic books.”

My favorite, which would’ve been perfect in this situation: “Well I hope not, because then I wouldn’t get to see all the pretty physical therapists here anymore.”

[michael-morale]

Hey Mike, don’t feel too bad. I was in line at Jason’s Deli one day waiting for my order, when I struck up a conversation with the lady standing in front of me. She asked me how my day was going and I told her that I was waiting on lunch so I could take it back to my office so I could get back to work, and she looked at me with a funny grin on her face. She asked me what my condition was and I told her that I had spinal muscular atrophy. After explaining what estimate was, she actually patted me on the head and looked at me and said “good for you”. Within a 10 second time period she turned me from a living breathing human being into a dog.

[kevin-schaefer]

I feel bad for people like this. Seriously, how ignorant can you be?

[mike-huddleston]

That just hurts my brain and my heart.  Ugh times about 100.

[michael-morale]

I remember one time I was eating dinner with my mother and father at Olive Garden. I had this one lady who kept staring at me while I ate. She stared at me for about five or ten minutes. After we finished our dinner, and as we were leaving the restaurant, I passed by her and she reached out and stopped me. She told me that she was surprised that I could feed myself as well as I did. I know she meant this is a compliment, but I felt it was necessary for me to mess with her mind. I told her that I had to do a good job in feeding myself, because if I did all of the normal things that I do while I eat, like drool and pick my nose, my parents told me that they would beat me when they got me home. The look on her face was priceless. Sometimes it’s just fun to be a jerk.

[kevin-schaefer]

Lol that’s great. Yeah I remember one Sunday at church an usher saw me, put his hand on my shoulder and said in a loud voice “let me know if you need anything!” When my brother and I sat down, I turned to him and said “hey apparently I’m blind, deaf and I can’t walk.” I find humor to be a great tool in these situations.

[michael-morale]

That very same thing happened to me one time. I had a guy at the Texas Ranger baseball game take my ticket from me as I went through the gate. He bent over and got eye to eye with me and yelled HAVE A GREAT TIME AT THE GAME. I looked at him and yelled back at the top of my lungs, THANK YOU. BY THE WAY, MY HANDICAP IS PHYSICAL, NOT AUDITORY. You could have knocked him over with a feather after I said that. Sometimes, it’s just fun to mess with people’s minds. (Evil Grin)

[adnan-hafizovic]

This is an interesting topic. First about the work of people with disability. It has people who can work, and who can not, for health reasons. Both people get the same amount of money from the state, and that’s not fair. I’m in the wheelchair and there is a persons who can walk and can do different types of jobs, and they get the same amount  money of the state like people who are in wheelchair. Is that fair? Of course it is not. And because of that, we need to use those days, not to wear T-shirts with the SMA inscription, but to talk in the media about this disease and how the state could and should help people with SMA.