Autism Awareness Month. Day 1 2017: A is for Ableism

IMG_1277

Ableism: discrimination or prejudice against individuals with disabilities

(https://www.merriam-webster.com/dictionary/ableism)

“How old is……are you?” the little girl in the pink rain boots corrected herself as her eyes darted from mine immediately to A2’s.  He was standing behind me and flapping excitedly anticipating a single engine plane landing from the observation tower at the regional airport where we all stood.

She licked the open space between her missing teeth and twisted her body from side to side as I looked back to A2 since he wasn’t answering her. “A2…..this little girl wonders how old you are.” I said to him as I touched the corners of my mouth as a starting cue for a long /e/ sound.

“Sevuh.” he said without looking way from the window.  I touched his back and then his chin and he looked up.

“Eeeeelehhhvuh” he replied, eyeing me closely for the cue.  I looked back to the girl to see if she understood.  She bit her lip and looked up at her own mother.

“Yes, you ARE eleven” I clarified and then paused to gauge interest. “A2….you could ask her ‘how old are YOU?'” in a futile attempt to redirect his attention from the excitement of a helicopter taking off from a landing pad.

Hannah was 7. And her brother was 5. And her other brother had his birthday this weekend….and he is 3. And her uncle lives in North Carolina and he came in to town for the party and now he was flying away back home. And there were green cupcakes at the party. With rainbow sprinkles.

STOP.

When you read this, what do you take away from this interaction?  How did it make you feel?  Did you picture yourself as the parent?  As the little girl in the pink boots?  As A2?  Or maybe you pictured yourself as the mom of the girl?

Since I was there, I will share my perspective.

  • Had A2 been in almost any other physical environment, he may have been the one approaching the girl rather than the other way around.  He may not have automatically told her “seven”, the oddly missing number from his rote lexicon from one to ten we worked tirelessly toward remembering to say during his seventh year of life.  Ironically, seven has been his automatic go-to age ever since then, especially when he is distracted.
  • I saw an opportunity to practice social language and articulation.  Another child asked him a direct and appropriate question in a shared environment.  In our society, it is the norm to make conversation in environments such as this. Even though he was distracted by something exciting, this is still the norm.
  • I saw another child who appeared to not understand what A2 said and also appeared to not know what to do next.  It then became my role to subtly articulate for the other child and to cue my child’s part in the conversation.
  • When I saw A2 was too distracted to engage in anything socially meaningful to this little girl, I engaged her for a bit to see if he would enter in at any point.
  • I was thrilled that this young child caught herself and re-evaluated how she wanted to ask her question and presumed A2’s competence by asking him directly.
  • I felt frustrated A2 missed a social opportunity.  I felt sad he would rather flap his hands.  I felt gutted to get more details about a 7-year-old-stranger’s weekend than I have ever gotten from my own child about his day.

I imagine the little girl’s perspective looked something like this:

  • I don’ t understand why he talks a little like my brother when he was a baby.
  •  I know when people want to know how old I am they ask me…..they don’t ask my mom.
  •  I wonder if he wants to know my uncle is flying a plane!
  • He didn’t know how old he is.  I wonder why he won’t look at me after I asked him a question…I feel uncomfortable now.
  • I’m glad that lady asked me about my weekend.  I love cupcakes with sprinkles and was glad I could share my favorite part.

A2’s perspective might be:

  • Humming of airplane motors sounds like the humming in my body.  The propellers move so fast, but that is how I see so many things…its like I can see each blade when they spin.  This is the only place I get to see anything like this! I’m so excited!
  • Mom is tapping me.  She wants something.  When I respond to her, she will then leave me alone and I can finish watching.  I better look up.
  • That little girl has nothing to do with this experience right now.  Why does she need to know how old I am when there are machines flying into the sky?!

Of course, I have no way of actually knowing the perspective of the little girl or of A2. I can only assume according to my own interpretations in the moment and based on my previous experiences.  I may be completely wrong.  The only perspective in which I truly have full insight is my own as evident in the richer description.

Is it possible that my intervention was sending a negative message to both A2 and the little girl because I didn’t fully accept where my child was in the moment?  Because I expressed feelings over the scenario, does that mean I perceive my child who happens to be disabled as less? Were my choices in this situation potentially fueled by own neurological/mental health differences?  Would it matter if they were?

If I did nothing, would the girl have pressed on?   Would her mother tell her “come on, he can’t answer you” and leave before the little girl could wait him out? Would she have learned that in the future not to bother to ask questions of kids who flap and have trouble speaking?

Should I have insisted he turn from the window? Should I have answered everything for him?  Should I have explained what she could do to connect with him in the moment?   Should I have insisted the mother help her child connect with mine when he didn’t answer? Do I represent all mothers of all autistic children?  Mothers of all children with Autism? All Autism Moms in this situation? Does she represent all 7-year-old neurotypical children?

I am a parent.  I make many decisions for my minor children every day. I make them do things that go against what they want to do because that is an uncomfortable reality of parenting.  Sometimes I give in to things usually because I am feeling tired or lazy. Other times, I just make the wrong decision or don’t respect their feelings and apologize later. The fact that I am literally my child’s interpreter due to his disability complicates this parenting thing because I cannot untangle the ball of cords that being a parent to my child vs. being a parent to my autistic child is. I  have no choice but to parent him from the only perspective I have day in and day out just like every other adult given the privilege of parenting. The thing I know for certain is every decision and action comes out of the intense and blinding love I have for them.

As a society, we are all learning together right now what it means to be inclusive, to accommodate and how language can affect disability rights, especially when it comes to Autism.  The growing pains with this process are palpable.  Subcultures and their preferences exist in any community often elusive to the general population but tend to sit right below the surface for the group affected creating a dissonance that effectively can halt any movement forward outside of the culture.  A simple/not so simple example: many adults on the spectrum prefer “autistic” as they do not see autism as a disability but rather as a difference.  Yet, in academia, person first language is still being taught and “autistic” is being used as a taunt by kids who are none-the-wiser that it is culturally a preferred term without negative connotation.  Some parent perspectives dictate a different mindset around autism preferring “has autism” and would never refer to their own child as autistic. As a professional in the field, writer and parent, I trip over how to refer to autism, my kids or myself for fear of sounding ableist and this nuance could alienate the very community for which I want to advocate regardless of my perspective in family systems theory.  When asking my own kids what they prefer, one says “yeah” to either option leaving me as his parent with the choice……the other has told me he doesn’t want to refer to it at all because he doesn’t care and he doesn’t know why it matters or why he would ever have to explain it to anyone to begin with.   Clearly, this hot topic within our autism community, this invisible topic to the general population, is a complete non-issue to my boys.  It is all about perspective.

These are complicated times.  There are many, many voices that make up the autism community.  There is a tentative balance in how we talk about autism and how we approach the disability perspective in the community. Perhaps it is because there are some great, big general rules of thumb when it comes to respecting individual differences and abilities and it should be apparent to anyone who stops to think for a moment.  Perhaps it is because disability voices should get precedence as representative to their individual needs and possibly the needs of others.  Perhaps it is because sometimes those individual narratives are different from the realities of many families and it becomes difficult to separate this inconvenient truth when there are no other options. My goal as a parent is to give my children as many opportunities to be successful and independent as they can be which means the choices I make for them as I google how to unwind that mess of cords will be based on their individual needs and the options and resources available. I also recognize that we do not live in a vacuum.  My experiences and access and circumstance dictates certain necessities.  I absolutely cannot expect that society as a whole will know or understand how to accept and provide the individual needs my child has based on his disability when I am not even certain I always know what they are.

There will always be Hannahs in pink rain boots who approach disability as a curious difference.  Whether she grows up with the same perspective is up to us as individuals, as caregivers and as a community in these brief moments. The one thing I know for certain is we are evolving toward a collective understanding from many different perspectives and these perspectives come from a place of respect and love. Almost always.  We all have to be better.

Day 1 2015: A is for Aides

Day 1 2016: A is for Advocacy

4 thoughts on “Autism Awareness Month. Day 1 2017: A is for Ableism

  1. Chachu April 4, 2017 / 4:32 pm

    I really enjoyed reading this. I never realized that it was an older adult thing to be referred to as autistic as apposed to an individual with autism. I personally don’t care either way about my schizophrenia because derogatory terms are more about tone than the word itself. It’s hard to convert through text, but I’ll try. It’s kind of like, ugh, shes schizophrenic. As apposed to, Oh? She’s schizophrenic? Maybe I should get to know her better. At least that’s how I understood the use of derogatory terms. 🙂

    • Jaycee Kemp April 4, 2017 / 4:38 pm

      I completely agree with the issue of tone and context for sure. Thanks for your perspective

  2. TakingItAStepAtATime April 4, 2017 / 5:59 pm

    Dc does the same thing and I do the same because I do not want an opportunity for socialization to pass him by (His go-to age is 18) – Also, there are so few people (strangers and relatives) that will make the attempt to engage – I do not want them to feel as if they made the attempt for nothing. I do often have to repeat the question to him and I often have to translate his responses.
    As for the Autistic and having Autism debate, Dc is older so both Having Autism and With Autism has been drilled into my head. I do have to think about using autistic, but I do try to because I know that is more acceptable to some folks. But then I have to deal with the people who do not understand that this is now considered acceptable…

  3. Stephs Two Girls April 7, 2017 / 9:56 pm

    Hmm, the whole has autism vs autistic debate is a tricky one for sure. What I do know is that if you, or anyone asked my girl right now which she preferred, she wouldn’t answer you (I’m 99% certain of that). She probably doesn’t care either way just yet, but if she did she wouldn’t be able to tell you anyway. So as her parent, I have to step in for her, when I want to explain to others. I explain only when I think it will help others to understand her – and therefore helps her. In all honesty, I use a mixture of all terms, depending on the situation, who I’m talking to etc.When my girl is old enough or verbally competent enough to say how she’d like to express it, or if she doesn’t want it to be explained at all, then I go with her decision. But for now, it has to be mine, as the person in the world who knows her best. Just as you made those decisions for your boy, doing what you felt best for him (and what I’d have most likely done in your situation too). Sometimes we have to try to relax and just get on with life….

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s