Today, I read more about the election, and it left me feeling sad. Sad because people are so angry. Sad because one side has already decided it’s rigged. Sad because way too many women have come out to discuss when they were assaulted. Sad because some of them are still not believed. Sad because I’m told that all guys speak like this and if I don’t think my husband or sons talk like this, I’m delusional.
But mostly, today, I’m sad because this all has become such a shitstorm. And in such a shitstorm, other less pressing issues become invisible. Maybe I’m totally and completely biased, but I’m still waiting to hear how people like my daughter fit into each candidate’s American vision.
Because right now, she doesn’t seem to.
Now, I must give Hillary Clinton credit – in the issues portion of her website, she mentions disabilities. She talks about people who are caregivers…but mostly in a “Caring for an elderly parent” way (though to be fair, she mentions parents caring for disabled children.) She mentions employment opportunities for people with disabilities. She has a whole other section for families dealing with autism.
This is way more than what Donald Trump‘s site has. Which is nothing. The closest the Trump campaign has gotten to the issue of disabilities is when he mocked Serge Kovaleski, a reporter with arthrogryposis, and the current allegations of him calling Marlee Matlin “retarded” behind the scenes on “The Apprentice” (Marlee has an amazing response. Trump has yet to respond as I write this. And regular readers know how I feel about this sort of thing.
Meanwhile, I’ve got a girl who’s rapidly growing up – and I don’t just mean getting taller. No, she’s hit the age where we have to start thinking about what we do when she turns 18, what happens when she ages out of the school program at 21. What happens to our middle class, moderately intellectually daughter when she’s an adult? What happens to us as her parents? What happens to me, as her main caregiver?
As my older three kids are also growing up, getting jobs, having separate lives, enrolling in every high school activity possible – you know, being normal youths – I’ve become more aware of that last bit. Maybe selfishly so. I am my daughter’s mother, but I am also her main caregiver. We currently don’t receive respite care, we only recently had my daughter officially labeled as “disabled” by the state, and because of income, currently don’t qualify for anything (there is a mythical waiver I need to look into, that would waive income in lieu of level of disability or something like that – or as I call it “One more hoop to jump through”…even then, we could only receive like 3 hours a month of respite care.) I’m certain things will change when she turns 18 and is considered an adult with a lifelong disability.
But even then, I may still be wondering – when will politics be concerned with people like my daughter? She may not ever be able to work. She probably won’t ever be able to live on her own. I’m not even certain a group setting would work for her. Not that there’s many options out there for us.
I have read Hillary Clinton’s autism initiative and it sounds pretty good. The only problem is, my daughter isn’t autistic, and therefore, it won’t really help her. I know this from our own experience. It’s great that she wants to make sure that autism services are covered by insurances – but insurances will deny those same services – speech, occupational, physical therapies – to children like my daughter. It’s great that she wants to do more screening in early childhood years for autism, but we had that done – and when told “Good news, she’s not autistic!” and I responded with “So what does she have?”, I was told “Sorry, we have no clue…” and was left out in the cold. When I called up a place that had a therapy that sounded like it could work for my daughter, I was told it was only for children with autism diagnoses, sorry, we can’t help your daughter.
I know, I know – autism is a big deal. I’m not denying that. I’m just allowing myself to be selfish, and want the same kind of opportunities for my daughter, and all the other kids like her out there who are falling through the cracks.
And I know, I should be happy that at least one candidate is even mentioning any sort of disability thing on their website. But we’re talking crumbs here, because the idea that disabilities will even be mentioned in the final debate is just that – an idea, most likely mythical. I doubt it will happen, and that’s sad.
I get it – other topics do take precedent. Talking openly about what is sexual assault is very important to me as well, as my daughter also has an 83% chance of being assaulted.
Which just makes me sad all over again.