Archive for August, 2019

SMA Awareness Month

Saturday, August 31st, 2019

August is SMA Awareness month. Throughout the month I posted four mini-blog posts on Facebook, and thought it was worth gathering them together, here, for anyone who didn’t get to see them all. It’s a tiny peek into our world of disability. Additionally, there is a bonus link at the end, I highly recommend you take a look! Here are the four off-the-cuff posts with the original photos I posted them with…

August 2

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August is SMA Awareness Month. I know some amazing people in the SMA community who are planning to post every day, or several times throughout the month, different facts and info regarding SMA, disability awareness, etc. I’d love to believe I will, but the truth is I’m sleep deprived, and I never know what I’ll have the time/brain power/inclination to actually do. I could say that SMA has been part of our lives for 9.5 years because that’s how long ago Oscar was diagnosed, and that’s when we first heard of it. However, it’s always been a part of our lives because David and I were each born as carriers of SMA, and never knew it. About 1 in 40 people are carriers, in fact. I am so much a better person for the presence of SMA in my life, much of that is owed, of course, to the bright light our Oscar is. I have learned so much about accessibility, about acceptance, about inclusion, about creativity, about advocacy because of SMA. I have met remarkable humans: kids, parents, PTs, physicians, NPs, RNs, PAs and so many more. I have learned that walking is definitely not the most important thing I can do and that one can have a completely fulfilling and joy-filled life and never walk. I have learned how to step out of my comfort zone and ask for help. I have learned how to step out of my comfort zone to tell complete strangers they are out of line in parking in the yellow lines or in the accessible parking “for just 5 minutes.” I have learned that doctors and administrators are just people too, and at times I know more than they do. I have learned when to listen to them, and when to question them, and when to be silent and do the opposite of what they suggest. I have learned to pick what really matters to me in life and stick with it. And to forgive myself when I am too tired to stick with it. I have learned that my kid knows more than I do about living with disability, and sometimes I have to back pedal and say “I’m sorry, you are right.” I’m looking for that last sentence to neatly wrap up this little post, but every day I am learning more, there is no end to learning, to experiencing, so there is no real end to this post either. Thanks for reading. xo

 

August 8

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More about SMA awareness month. Things we have to think about every time we leave the house, especially going to new places: Will there be VAN accessible parking? Is there any accessible parking at all? Are all the spots already taken? Where are the curb cuts? Are there even curb cuts? Will there be muddy/gravelly/uneven or otherwise challenging or inaccessible terrain? Is the entrance to where we are going accessible? Do we need to bring one or more of our portable ramps (we‘re SO lucky to have them, nonetheless they are heavy and awkward to wield)? If we can get inside is the whole place accessible? Are there additional interior steps? Are things placed at a reasonable distance to allow a wheelchair easy access through? Will it be super crowded (it’s very challenging to move through a crowded space in a wheelchair)? How much extra time do we need to allow for strapping Oscar in with his 5 buckles he can’t do himself to secure him in our van? How much extra time do we need to allow for a slow lift or a busy elevator? Do we need to cover Oscar’s joystick because of rain or snow? Has snow been adequately cleared for a wheelchair? Is there an accessible bathroom? If the bathroom is labeled accessible, and even if it is ADA approved, is it actually accessible? (Many ADA approved stalls are too small, or have doors that open inward, making it impossible to close the stall door once a power wheelchair is inside the stall). Is the bathroom gender neutral? (When Oscar and I go out together, alone, this is key, he is not ok with going into a women’s room!). And probably a dozen or more other things that are so second-nature to our thinking that I can’t even identify—just to leave the house, people.

 

August 21

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SMA Awareness month post: People say things to people in wheelchairs that they don’t say to people who don’t use wheelchairs. It can be weird. Watch out you might get this face, if you do! Oscar, David, and I are working on coming up with some come-backs that will hopefully make people more aware, and hopefully not come off as rude, but honestly, this kid hears so many weird things (and the same ones again and again) it’s hard, sometimes, to address some of these and not sound rude. Some examples: We were in a parking lot recently (in the rain) and Oscar was zooming into the van. A passerby said, “Wow, look how fast!” (wouldn’t you be running in the rain?!) and then (and this is one he gets ALL THE TIME), “You really know how to maneuver that well!” I replied, “Yep, just as well as you and I can walk.” She laughed a slightly uncomfortable laugh. I get that someone unfamiliar with people in wheelchairs wants to relate in some way, and this seems to be an easy go-to. But would you ever say to an ambulatory ten-year-old, “Wow, you’re really good at walking!”???? He/we also often get, “I’ll pray for you!” Oscar’s comeback for that is, “Yes, please pray that I don’t get a lot of homework.” People in wheelchairs don’t need more prayers than people who walk. Life in a wheelchair is not unfortunate. Honestly I’d like to say to people who say that, “And I’ll pray that you learn not to ‘other’ people.” People also like to ask if Oscar has a license or tell him he’s going to get a speeding ticket. That was a little bit cute at age four. Not so much at age ten. Oscar has been in situations where adults in charge have said, “Slow that thing down!” or “Park that sucker!” The chair is part of him. It is dehumanizing to refer to it as separate from him, as he is the one in control. Would you ever say, “Slow those legs down!” to a kid who is running? Strangers often also like to refer to Oscar’s chair as a “car,” “cart,” “buggy,” etc. Perhaps there is some fear of naming what is. A child in a wheelchair. Guess what? He knows it is a wheelchair. He has known since he got his first wheelchair at the age of 19 months. It’s not scary, it’s the truth. And he LOVES his chair. The day he got his first power chair at the age of 3 remains one of the happiest days of my life, because he finally had the independence that other kids his age had had for some time. We’re loud and proud here in this family. People with disabilities are people. Talk to them like you to talk to any human.

 

August 31

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SMA Awareness Month Post: Disability Pride. Yes PRIDE!!! Approximately 20% of the US population have a disability, and nearly one billion people worldwide have disabilities. A disability is just one of the many ways each human is unique from another. Oscar is so proud of who he is, as are so many people with disabilities. He doesn’t wish he was any different than he is. Oscar does not wish he could walk, he never has, in fact. Oscar’s disability is a part of who he is, it cannot be separated from him. Oscar says, “You shouldn’t feel sorry for me because I’m disabled. It’s who I am, it’s part of me…I’m just a kid like any other kid.” This concept is foreign to many. It was somewhat foreign to me before disability became a part of my everyday. Architecturally the world is not made for people in wheelchairs, and that is its own giant hurdle. When you notice a business with no accessible entrance, or no accessible bathroom, or shelves too tight together to easily fit a wheelchair, say something! But please also say something when you hear people using a different tone of voice with disabled folks, when you see people treating those with disabilities differently simply because they are disabled. In order to spread this message of pride, we need an army of accomplices. It’s exhausting day in and day out, especially for Oscar, to have to explain himself, to have to listen to the strange things other people say to him. Anyone who belongs to a group that is marginalized by society knows this. Because of my relationship with Oscar my mind and my heart are expanding. I am learning to further grow my empathy, I am learning to look around me more, to place deep trust in the voices of those speaking from marginalized communities. Join us in our pride. Not pride that Oscar is so cool *in spite* of his disability. It is not something to *overcome*. It is not something to *fight against*. It is not an IT. Disability is an important part of who Oscar is.

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And finally,

I’d like to share with you the instagram account of a dear friend of ours who we know from the SMA community. She spent the month of August posting on Instagram in honor of SMA Awareness Month, and her posts were informative, moving, thoughtful, hysterical—all of it—capturing moments of the disability experience in a raw and beautiful way. You’ll see some of our sentiments mirror one another, and she also offers different layers, details, perspectives, especially as an adult who uses a wheelchair. Her posts moved me to no end. Check them out:

https://www.instagram.com/letsdothisheather/

We first met Heather when Oscar was three!

Oscar and Heather become fast pals at the conference. Seen here making the diver "OK" sign together!

Oscar and Heather become fast pals at the conference. Seen here making the diver “OK” sign together!

 

Happy SMA Awareness Month! Thanks for reading!!!

xxxooo

Sally, David, & Oscar