Privilege, Marginalization and The Special Needs Parent

I don’t talk much about race on this blog, nor is it what this post is about — but this morning I got stuck reading yet another “spirited race discussion” on Facebook and could not help but make some correlations.  

Shortly thereafter I found myself sitting in the parking lot on the side of my son’s school building watching the snow fall and not wanting to get out of the car in the 19 degree temps.

Why was I at the side of the building when the accessible parking spaces are in the front you ask?

Great question.

The accessible spaces are blocked by the school buses most mornings so, I can either wait behind them (getting stuck between them), try to wiggle around them (which is off the table when their stop sign is deployed) – OR – go to the far side of the building where there are no accessible spaces (read, no designated stripey lines to allow me the space needed for adaptive equipment like wheelchairs etc.), BUT there is a ramp that at least gives me access to the sidewalk.  I’ve tried parking closer to the doors then picking up my son in his wheelchair and placing him on the sidewalk, trust me, the ramp is must.

This morning, school buses stacked up 3 deep , I chose the latter … to park on the side of the building.

I begun my morning ritual of getting out, removing the wheels and body of my son’s chair from the passenger side back seat of my car (because they do not fit in the trunk), assembling it in the parking lot avoiding the large half-frozen puddle perfectly placed right in front of the passenger side door (joy joy), then walking around to the other side of my car, hoisting my 40 pound son out of the car seat and into his wheelchair, buckling him in then wheeling him up onto the salt covered sidewalk.  *whew*  

About 20 feet into our journey I noticed the right wheel was threatening to wobble right off and roll into the winter remnants of shrubs gone by, so I stopped, balancing the chair with my son in it on my left knee at a 45 degree angle and re-affixed the wheel (while he flapped his hands apparently thinking it was an amusement park ride).  Joy joy.  Finally, wheel re-attached, we slowly made our way up the remaining length of the building around the corner to the front door (which was still blocked by a stack-o-buses). All this in the wonderful falling snow.

That is a typical morning.

Now, before you say “it’s illegal to block the accessible spaces”, yes I know, and I’ve already contacted the Principal (last year right after school started), but alas, the changes they have planned don’t happen until Summer and probably won’t benefit me much, especially if I decide to send my son on the bus in the next school year (which is a huge possibility because of what it’s like to drop him off in the mornings … did you read that?!).  That is not the point of this post either.

Once he was safely inside, I strolled back down the length of the building in the snow to my car, then sat thinking about how the feeling of being forgotten, not prioritized and marginalized that I feel most mornings when I drop him off to school reminded me of the passion and feelings expressed in the thread I’d just lurked on early sharing the hurts and ignorance of race related history.

You know what it feels like you guys? IT FRICKEN SUCKS!!! 

Even though I know it’s coming that doesn’t make it suck any less. Matter-o-fact, I’m sure someone could prove that the anticipation of being ignored or pushed to the back burner or not given the same opportunities as the masses could prove to be worse than not knowing you’re about to be shiested every time.  

Some mornings I do my do quietly then get into the car and play music to get my “first thing of the morning” mood right, some mornings I pull up (intentionally late) and the school buses are all gone so my load is a bit lighter, but some mornings it sucks and I feel like crying which real talk is a crappy way to start the day.

Ultimately I think it boils down to the acknowledgement of those with inherent privilege (i.e. able-bodied individuals like myself) that an inequity exists and that society is indeed DESIGNED to accommodate them.  I lived without any concern for those with special needs for 35 years, but in the past 4 years I’ve seen and felt what it’s like to be excluded or overlooked on so many occasions I can’t count them all.  It’s heartbreaking.  And not only that, it’s hard our here for real … like hard hard. *whew*

For me to say I was ignorant of “the struggle” of the minority and marginalized group of those with special needs would be the understatement of the millennium. And if I’m being honest y’all, in that ignorance I know  I overlooked these amazing people, for all intents and purposes did not see them, therefore their needs and concerns were not a priority to me and they were marginalized, at least in my own little one-woman world.  But our society is made up of all of our one-woman and one-man worlds so if enough of us with the privilege fail to listen and understand what those without privilege are saying then we are part of the problem.  I don’t know what it’s like to be poor, I don’t know what it’s like to have my religion be the minority, I don’t know what it’s like to be teased or unpopular, I don’t know what it’s like to look in a magazine and not see someone that looks like me staring back (read tall lanky and not hard to look at) and, although I now have some insight, I don’t know what  it’s like to be in a wheelchair.  

So who am I to say to those who try to share their struggle that they are wrong?

Who am I to stubbornly and egocentrically think that my experience and point of view is the only valid one?  I don’t have to always agree but I can at minimum listen, understand, and hear. At maximum I can jump in, become an advocate, and do something to help effect change.  It’s also important to know that there will be good days and bad days and I can’t always expect the person struggling to tell me their struggle in the prettiest pre-packaged way that makes me comfortable. Sometimes you just want to break down in front of the school and start cussing and crying if you know what I mean. Shoo. 

And that’s all I wanted to say.

So I know you’re wondering what happened after I left the school parking lot.  Did I go binge eat donuts and bathe away my sorrows in a tub of coffee, candy bars or mimosas?  *insert dramatic suspense music here*

No … because like I said … this is practically my every morning situation, and the sorrow that accompanies the assignment of being mom to a pretty special son who just happens to have unique needs is a constant undercurrent that I do my best to not let sweep me away into its blackness.  

So I went home, and made a healthy breakfast, and stared out the window at my beautiful back yard, and read, and enjoyed the quiet time until my son came home (he’s 3 … there is no deep couch sitting when he gets home lol).  

I also thought about what I could do to affect change not just for myself but for those coming after me.  

I’ll end by saying, if you are in a privileged group whether if be gender, race, religion, age, ability and so on … know this … those on the other side who are pushed to the side and often times overlooked are STRONG.  They rise up every morning knowing the deck is stacked against them and the sailing won’t be as smooth yet, the vast majority manage to create something beautiful in the midst of the rigged game.  See their strength.

If you liked this post please share it with your friends, and check out my Motherhood section for more posts on my experience as a special needs parent. Thank you!

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