I have a feeling this might get me some hate mail. Don’t bother. If this post makes you angry at me, you’ve missed the point.
“When we raise the bar for one of us, we raise the bar for all of us.” That is a mantra that I have repeated often, and I really believe it. When we raise expectations or standards for even one child, we are doing it for all.
That being said, I am feeling really resentful and just generally pissed off lately.
When will *my cause* be your cause? (and I’m looking at Facebook people who do not live in special needs land)
I’ve watched as you changed your Facebook profile photo–to the colors of France, Belgium, the rainbow, the blue line. I’ve watched as you’ve reposted memes about bathroom usage, the wall that Trump wants to build and the #BringBackOurGirls. I’ve watched as you vowed that certain small groups have your support. What about us–my family? Do you know our struggles? Do we have your support? Then why can’t you say it out loud?
Mind you, I get it. These are all really important (and sometimes very sad and tragic) issues. They all need our attention. I’m just tired my issue never getting any attention….from anyone besides special needs families.
Did you know….despite the fact that people with disabilities make up about 20% of the population:
- They make up about 30-40% of the prison population.
- Children with disabilities are 3x more likely to be bullied, than their non-disabled peers.
- Only 17% of people with a disability have meaningful employment.
- Statistics on people with disabilities and suicide? Considered such an insignificant issue, it’s not even studied.
- Many states still have laws that state that people with disabilities cannot be married.
- It is still perfectly legal to pay people with disabilities a wage that is much below minimum wage. And it’s exploited.
- Half, yes half, of all people killed by police have a disability of some kind.
The bathrooms…don’t even get me started on the bathrooms! First, there is the issue of there being a lack of family restrooms. What is a mom to a 16-year-old disabled boy supposed to do, if he cannot go to the bathroom himself?I can tell you, even going in ahead of time and announcing that you are coming in is not appealing to most of the population. And, why should I have to announce to complete strangers, out in public, all of my son’s skill deficiencies, just so we can use the bathroom?
And, even if there is a family restroom, good luck finding a changing table for a large child or adult who cannot stand and still needs assistance. Many parents are forced with the choice of either just staying home, or laying your child down on a public restroom floor.
Am I getting through yet? Because I haven’t even started on the school system yet. School suspensions, locking disabled kids in closets, strapping them down to chairs, mental and physical abuse–I could go on for days. It’s all still happening, every day, all across the nation. Even in some of the ‘best’ school districts. Not one child is immune.
When is the last time you heard a candidate for political office or any politician, for that matter….mention people with disabilities?
This past week brought us the incident of the autistic man in North Miami. I keep seeing on Facebook- “At least he wasn’t shot!” Congrats America, you have set the bar so low for adults with disabilities that you think “not being shot” is an accomplishment.
Despite many federal laws in the USA, designed to protect people with disabilities and guarantee them an education….we are the last marginalized population on the planet. People still lock them in basements, stealing their meager government assistance checks.
This past spring, as the school year was coming to an end, I was literally hearing from 2-3 moms a day…asking for advice on what to do because their child had been discriminated against. Left out of field trips, kindergarten graduations and end of year concerts….we’re not welcome.
Rallies, informational sessions…I see all the pleas for assistance. This is more of an emotional brain dump, so I won’t bore you with more statistics. But more people die of epilepsy than drug overdoses, where is the outrage? My point is that there are many more disabled families struggling, than families struggling with the latest cause du jour? (yes, important causes, I get it)
So why don’t we ever get any air time?
It might just be a meme or a Facebook profile photo with a ribbon…but for special needs families to see that from non-special needs families, it helps. It’s a small gesture, but it’s one that helps, trust me.
I want you to be able to get married. I want my son to be able to get married too.
I want you to be able to freely use the bathroom. That is something my family wants too, and doesn’t have.
I want us to be safe from the dangers of ISIS and terrorist attacks. I also want my son to go out in public without being bullied, and be able to age as an adult and not be abused. So far, our society cannot guarantee that.
I want fewer/no people to die from heroin. Or drunk driving. Or epilepsy. They ALL deserve our attention. It’s just been very frustrating for me, and maddening at times….to see our kids continually marginalized. That despite other groups making advances, we do not. IDEA 1975 has not improved outcomes for our kids. Despite 41 years, my child has the same projected outcomes as his disabled peers from 1975. Every time I see another group make an advancement, I think, “Ok, this is it! Now it’s our turn!”
And our turn never comes.
Edited to add: I probably shouldn’t try to be eloquent and further explain myself at 7 am, but given the misunderstanding by some, here goes….
This essay is not about me trying to invalidate or squash your feelings. This isn’t me screaming “special needs lives matter!” over you when you say, “Black lives matter.”
When unarmed black people are killed by police, I see it getting a ton of acknowledgement on social media, from all races and types of people. As it should.
When Ethan Saylor, an unarmed man with Down Syndrome, was killed by police when he went to the movies-silence. By and large only shared by special needs families.
When I see other pressing issues–police being shot, terror attacks far away, they all garner interest by all types of people. As they should.
But keep a woman with autism chained up in the back yard? Silence. Where is the outrage?
I just would like to see all kinds of people equally sad and outraged at the atrocities that happen to disabled people, every day.
Because the silence is deafening.
Thankfully, the good messages have outnumbered the bad, like this one:
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