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November 20, 2013

Please note: The following is written from my very limited perspective as a neurotypical, hearing mother of three autistic children, with the youngest being the only one who is deaf. I have no first-hand experience as either deaf or autistic. My experiences with both deaf and autistic culture have only spanned a little over four years. The following is based solely upon my own observations. I am painfully aware that, like many parents, my perceptions may be incorrect. I would be tremendously grateful for any corrections or insights you should like to leave in the comments section.

“Once upon a time there were two countries, at war with each other. In order to make peace after many years of conflict, they decided to build a bridge across the ocean.

But because they never learned each other’s language properly, they could never agree on the details, so the two halves of the bridge they started to build never met.

To this day the bridge extends far into the ocean from both sides, and simply ends half way, miles in the wrong direction from the meeting point.

And the two countries are still at war.”
― Vera Nazarian, The Perpetual Calendar of Inspiration

I picked Mary up from school yesterday. It was a perfect, cool crisp fall afternoon, and there were plenty of staff, students and parents walking through the campus on their way to buses, cars and meetings. It was busy. But it was quiet. Students and staff happily signed to each other. As the cool wind rustled the dancing leaves, all I could think was that this is a sacred place. It is not just a beautiful campus, but a place where community is fostered. A community based on not only accepting disability, but focused on using this different ability as the basis of a supportive vibrant and beautiful culture. There is nothing here that revolves around “fixing” or “changing” or forcing the students to become more typical. Here, everyone, hearing and deaf is encouraged to learn the language that the students are already using. My high school world history teacher used to say, over and over, “Language is culture. You take away a country’s language and you take away its culture.” But in watching the students here, I can’t help but think the opposite is also true. If you can share a common language you can develop a culture. And I thought back to the statement that one of Mary’s teachers made to me last year when she explained that some people use the words “speech” and “language” interchangeably, when they clearly do not mean the same thing. My daughter has language, even though she does not have speech. They are not the same. And the beauty of this sacred space is that they get it. And instead of forcing her to do the thing that she cannot, they take the extra effort to meet her on her level, to learn her language instead of forcing their own upon her. And it is beautiful to watch the satisfaction on her face when she knows that she is being understood and that she is being recognized – even if she is not communicating in the traditional ways.

When I watch events unfold in the autism world like what has happened last week, I can’t help but see the parallels to the deaf world. Right down to the language. Many deaf adults will tell you that they prefer to be called “deaf” rather than “hearing impaired” as the former is descriptive of not only their level of hearing but of how they identify culturally, while the latter only points out something that is missing. Similarly, many autistic adults would prefer the label “autistic” versus “person with autism.” Semantics to an outsider perhaps, but a point of heated contention to those inside the community. It is amazing the ability that we have to divide ourselves when, in theory, we should all be working towards the same goals – support, independence and respect for our autistic friends and family.

But I see it again in deaf culture. In our city there are actually two schools for deaf children. One focuses on turning their deaf students into “hearing speaking miracles” who do not use American Sign Language, and do not require an interpreter when they ultimately mainstream into their local neighborhood schools. I know many parents who send their children to this school. It is the school that we tried for Mary when she was younger because it was the only deaf nursery school program we could find. It is the same school that after seven months gave up on my sweet girl – which in our case was for the best. I know the parents who do send their children to this school believe strongly that through hard work and perseverance, their child speaking as opposed to signing will give them a better chance at a “normal” and “successful” life later on in a “hearing and speaking world.” I get that. I completely get that. I would be lying to myself if I said there wasn’t still a part of me that hopes that someday Mary will speak again. And I think it is a very similar line of thinking to the parents of autistic children who initially hunt down every therapy, any diet or biomedical treatment, hours upon hours of ABA and social skills groups so that their autistic child can learn how to be “normal.” And, sure, for some deaf children and for some autistic children, the appearance of normalcy is a completely attainable goal. But the work of getting there and maintaining it can be completely exhausting. That is a choice that is made within a family. We are all just trying to do the very best we can for our children, and if that works for your family and your child, then that is what you need to do. After sampling some of that lifestyle, we chose a different path.

After we left the first school, we were welcomed into Mary’s current school. This sacred place I was telling you about. At her old school there was constant crying, sheer exhaustion, even seizures brought on by intense fatigue, and regressions. But here, she has blossomed. Here, she smiles and flaps her hands excitedly as we pull through the gate each morning. Here she is greeted by friends and smiling teachers. Here they watch her and take their cues from her. They accept any form of communication she is able to give. They recognize when she makes a choice with just her eyes, they cheer when she makes a choice on her ipad, and they encourage any kind of gesture she is able to make. They encourage and celebrate her, just as she is. They accept her. And she has made such progress here because of it. Because, here, no one tries to change her. No one tries to make her “normal.” Here there is just patient, loving encouragement and acceptance.

It is unlikely that in the hearing world you would find folks frowning on the use of American Sign Language. In fact, in many large events, political speeches, performances, and even emergency announcements, you may see an interpreter standing just to the side, making it possible for the deaf people in the audience to understand what is being said. No one gets angry with a deaf person for being unable to hear. They simply make the necessary accommodations and move on. Why, then, is it so hard to believe that this same society could simply make the necessary accommodations for the autistic community? When a deaf person signs instead of speaking, we do not instantly assume they have nothing to say. We either converse in ASL, or find an interpreter, or even a pen and paper if need be. So, why when an autistic person is communicating through behavior do we simply assume they have nothing to say, or that they are lost in their own world, or that whatever it is must be something that needs to be normalized?

Obviously, these are two very, very different communities, but there are similarities as well. There is opportunity for one to learn from the hard-fought lessons of the other. Because, at the end of the day, the parents, the advocates, the self-advocates, the autistic adults, and the autistic children who will soon be adults, all have the same basic goals, even if the interpretations are different. One of the huge successes of a school like the one Mary now attends is that the school is its own community, and involved in all the decision making and administration of the school are many deaf adults. The community that is working with these deaf children and young adults gains a great deal of input from deaf adults. They listen to, respect, hire, and put in executive and teaching positions people who understand from a first hand perspective what their students are going through. And that perspective is seen as vital. Just as the perspectives of autistic adults on all ends of the spectrum should be considered vital when a parent is trying their level-headed best to raise a happy, self-confident, fulfilled autistic child. Because if we could just step back a minute and listen to the folks who have already made this journey ahead of our children, they might have some powerful insights… They might be able to interpret…. And they might even be able to help us learn a whole new language.

2 Comments leave one →
  1. November 20, 2013 4:37 pm

    I think this is a very valuable post for ppl to read. That ending summed it all up very well.

    • November 20, 2013 5:43 pm

      Thanks. I always find I learn the most valuable lessons from talking to deaf adults and autistic adults. They see so much that I can miss, and their insight has really helped to bring me closer to all of my children.

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