Where do Americans like my daughter fit into politics?

15 Oct

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.

IMG_7409

^I’m with Herself ^

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.

 

 

 

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4 Responses to “Where do Americans like my daughter fit into politics?”

  1. nanis October 15, 2016 at 2:29 pm #

    First of all, you are not selfish. You only want for your child what everyone else wants. And second, this is not a country that cares overmuch for its children, handicapped or not. The 83% figure for sexual assault is shameful; the fact that you have been told, “Sorry, we can’t help” is shameful. Your usual optimism is an inspiration to all of us, and I applaud your asking of all these questions.

    Politicians do not really care about people ~ they care about votes.

  2. Amanda S. October 15, 2016 at 4:07 pm #

    You are preaching at the choir here. I had a fight to get onto disability because I have 1 very rare condition and several other things going on that by themselves would not be a that big a deal, but by all piling on have become crippling. Like Maura, I don’t fit into a box – and I am scared to death of what will happen if they decide to tighten up on the boxes. Here in the “land of the free, these labels have become so important, but if anybody spent a day with me or Maura, they’d see that there are very big problems. It makes me angry that we’re getting shoved out onto a limb because we don’t fit into a neat category. Life is messy, humans are messier. That’s all I’m sayin’.

  3. Renee Anne October 15, 2016 at 4:36 pm #

    This is not selfish in any way, shape, or form. This is your reality and you are owning that. You want for Maura what all parents want for their children: what is best for them. Oftentimes, people without specific diagnoses are….I don’t want to say ignored or forgotten because they’re not…because there isn’t something specific that can be said other than a generalized “disability” diagnosis, they don’t get the attention they deserve, especially in politics. When you say “autism” or “IQ of 60” or something concrete/specific, people have an idea of what those could mean. When you have a general, non-specific disability, ideas of what that could mean range from cognitive impairment to inability to walk to a specific diagnosis (autism, ALS, MD, etc.) and it’s too broad for people to understand.

    Family Guy did it best when Lois was running for….school board, maybe: keep it short and simple so people can understand (and not have to think too much).

  4. Evelene H Hawley October 17, 2016 at 5:41 am #

    Your feelings about the election politics are not as unique as you may feel. Even prior to the election, I was feeling that news and political rhetoric has become so narrow that we talk about budgets and welfare in terms of government spending and freeloading bums. Massachusetts has a charter school system which pulls out more $ per child to charter schools than is put into the budget per kids and by popular vote they are expanding that program. My kids both have diagnoses: one has CP and down syndrome, the other is bipolar with ADHD. There is no charter school appropriate for them. So you’re not alone, there are definitely days when I feel as though our whole family is “other” and expendable.

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