Do All Lives Really Matter?

October 9, 2016

My daughter, Allison, is autistic. I had been aware from the time she was about three weeks old that there was something radically different about her.  Until we got the diagnosis, I tried to reassure myself that she was just an extremely demanding and difficult child, but when she was about three, we learned that she had some developmental delays. Then came the official diagnosis when she was 5. We were devastated.

But then we regrouped, and we resolved that regardless of the label, we would do everything we could to maximize her potential.  She spent most of her pre-school years attending speech and occupational therapy twice a week, saw a behavioral counselor once a week, attended both a special-needs preschool and a traditional preschool, and participated in a therapeutic riding program.  When she was ready for kindergarten, the Catholic school our older daughter attended wouldn’t admit her because they didn’t want any “retards” (you read that right), and our public school was not willing to provide any specialized services for her save a half-hour each week of occupational therapy.

So we bit the bullet an enrolled her in a private school for children with learning disabilities.  We couldn’t afford it, and we took on staggering debt to keep her there for 8 years.  When she aged out of the school, we sent her to a Christian academy that had a special program for children with learning disabilities.  The teachers, staff, kids, and parents were some of the kindest, most compassionate people I have ever met, but the school was not able to provide the level of support Allison needed, so we sent her to our public middle school, and then high school, where she received outstanding, focused attention by determined and devoted personnel.

Through those years, Allison continued with therapy and attended a special after-school program for kids with disabilities at a local gymnastics center.  She was made to feel welcome at a performing arts workshop and summer camp that she attended for many years.  She kept up with her riding and participated in social, community, service, and advocacy activities with a group of other young adults with disabilities.  Allison graduated from high school, completed a year-long internship in a job skills program for young adults with disabilities, and then realized her dream of attending a vocational training school in West Virginia for people interested in working in the equine industry.  After receiving her trainer’s certification, Allison returned home to continue her internship at the barn where she rides.  It is her goal to obtain a paid position as the assistant to the therapeutic riding instructor and, perhaps someday, to become a therapeutic riding instructor herself.

Since Allison’s birth, years, a huge percentage of our family’s life has been focused on helping her set and work towards goals.  It has not been easy, or cheap.  We have attended many, many doctor’s appointments, therapist appointments, IEP meetings, and meetings with vocational resource personnel to make sure Allison is getting what she needs.  We have been through numerous medication trials and too many medical interventions to count.  We have hired tutors and coaches for Allison to work with her on a one-on-one level to supplement her educational, vocational and therapeutic services.  Over the years, I have shed many, many tears over Allison – for what I can’t fix, what I can’t make better; the comments I’ve heard made about her, the looks I’ve seen directed at her; the low expectations of those who think she’s unemployable, the refusal of her instructors at “pony college” in West Virginia to acknowledge her limitations or go the extra mile to help her keep up.

I haven’t been a perfect mother, or, in some instances, even a very good one.  What we have always striven to do, however, is to instill in Allison the conviction that she is not defined or limited by her diagnosis, that she should set goals without regard to her disabilities, and that while she may have to work harder to achieve less than her chronological peers, there is no reason that she should not live a fulfilling, meaningful, and independent life.

Although Allison has made huge strides towards her career goals, social interactions remain painfully difficult for her. She has trouble making and keeping eye contact or carrying on a conversation that strays too far from one of the few topics about which she feels confident in expressing her thoughts (Harry Potter and horses figure largely in her repertoire).  She has some unusual tics, and her verbal expression and physical carriage are indicative that she is not neuro-typical. When our family considers how much progress she has made, how many obstacles she has overcome, however, we burst with pride for her bravery and determination, and we believe that there is still much she has left to show us about what she can accomplish despite such a terrifying diagnosis. We also feel enormously grateful that the combination of a sheltering childhood and a team of teachers, therapists, doctors, and other helpers who have given their heart and soul for her have largely protected her from the kind of teasing she might have experienced had she been born 30 years earlier. In our experience, so many families have been confronted with the challenge of a child with special needs that they have raised siblings who are compassionate and inclusive; as well, the increased sensitivity and awareness of autistic spectrum disorders in the last ten years has meant that Allison has not had to face the cruelty of and ignorance of those who think it’s okay to mock a disabled person, so much so that I naively thought that such people no longer existed.

Which is why, when I saw Donald Trump mimicking his version of Serge Kovaleski, a reporter who is disabled, I was—first and foremost—just plain shocked.  Trump’s gesticulations, intended to approximate the manner in which Kovaleski’s arthrogryposis manifests itself, were absolutely astonishing to me.  If not because he was a sensitive and decent human being, then at least for the sake of his image, did Trump not appreciate the message he was sending? And when it was pointed out to him that this behavior was not acceptable, did that reporter get an apology?

No, he didn’t. And neither did the Muslim, Jewish, Mexican/Latino, Black, or LGBTQ communities, and neither did women.  The hateful words we heard issue from Donald Trump’s lips during the campaign and now see spilling out of the mouths of some of his supporters, emboldened by those words in the aftermath of the election, have apparently ceased to be shocking.  It’s a new normal, and not a good one.

I didn’t vote for Donald Trump for a lot of reasons.  For one, I questioned his lack of relevant experience.  I found his ceaseless self-aggrandizement and brand promotion tasteless.  I questioned whether he understood, or cared to understand, the complexities of the job for which he was interviewing.  I had doubts about his attention span and ability to remain committed to and interested in the role of commander in chief – it’s a thankless job subject to stringent, intensive scrutiny.  There were a lot of reasons why I pushed the button for another candidate, but the main reason – the surpassing, deal-breaker, no-way-in-hell-would-I-ever-vote-for-him reason came down to this:  He thinks my daughter is sub-human.  Someone to be mocked for things she has no control over.  A freak.

There are many out there who have excused Donald Trump’s many caustic, horrible remarks – they say that those remarks don’t represent who he really is.  They say that those who belong to the groups he offended should grow up, toughen up, lighten up, and move on.  They say that they may not like some of Trump’s comments, but that he represented the better alternative by virtue of his economic, immigration, and foreign policy positions.  They say there are able to overlook those statements and see all of the good things Donald Trump wants to do for our country.  That’s mighty big of those people, most of whom don’t belong to any of the groups about which he’s made such hurtful and searing statements.

There are many ways in which a person reveals his or her character to the world.  One of them is by the things they are willing to overlook in service of their own self-interest.  To me, a vote for Donald Trump spoke volumes about how that person felt about people with disabilities in general, and my daughter, in particular.  It was beyond incomprehensible to me that otherwise good and thoughtful people (of the 61 million who voted for him, there must be at least a few) could choose for president a man who did not feel deeply, appropriately ashamed, for stooping to such depths as to make fun of a person with disabilities.  What Donald Trump’s election communicates to me is that there are 61 million people in this country to whom my daughter’s dignity means nothing.

I’m certain that most of the people who voted for Donald Trump never stopped to think about how his words affected so many of our country’s citizens, because a lot of them probably don’t know many Muslims, or Latinos, or Jews, or LGBTQs, or disabled people, or if they do, then not very well.  I’m pretty sure that when people cast their ballots for The Donald, they didn’t stop and think about how a Trump presidency would impact the lives of people with disabilities, including Allison – I guess I shouldn’t expect them to, nor would I imagine that they ever considered how that vote might be perceived by Allison, and others in the disabled community, but I know, because she’s told me. It goes something like this: “I guess people like me don’t matter.”

There’s a long list of things Donald Trump needs to do as president – and assuring the disabled that their issues are important is probably well near the bottom of his list, but it shouldn’t be. As so many who supported him are fond of saying, “All lives matter.” To all of those people, I say, let it be so.

 

 

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