Don't Call Me Special, Says A Son On The Spectrum
06/18/2013 - 15:57
Shelly Christensen
Shelly Christensen
Shelly Christensen

Many would say that my son Jacob, 27, has “special needs.” Jacob would never describe himself that way, although he will tell you he has Asperger syndrome. So because Jake and I, each for our respective obvious reasons, take an intense interest in the semantics of disability, I recently asked him why he thinks people so often apply to him a term that he rejects.

My boy sprawled his 6-foot-plus frame on the carpeted floor of my 9 by 12-foot office and fell to petting Ziva, our Sheltie who has arthritis (she’s a “special needs” dog, I suppose) as he offered his opinions on the subject.

Political correctness, Jacob said, can get in the way of people doing what’s morally correct. The term “special needs” is an example of this. When we’re being politically correct, we focus so much on what we call people that we don’t focus on who they actually are. Using this term, according to Jake, means that “you’re going out of your way to make them seem ‘other.”’

“This person has needs beyond the norms of society,” he said. “People who aren’t comfortable with that try to make it a label.” Then, because of the speaker’s discomfort, the individuality of the person so labeled disappears behind the “special needs” designation. The result is a generalization that does nothing to provide meaningful information about the person, but does much to create a barrier to human relationships.

Which brings up Jacob’s next point: that “special needs” is pitying and patronizing. He thinks that this is a “talking down” term. The assumption of “less than” is built into it, as if all people who are categorically lumped together as “special needs” are incapable of intellectual understanding, regardless of what one’s disability actually is. 

“Special needs” is really just a euphemism for “disability,” we agreed. To be disabled, according to Merriam-Webster, is to be “incapacitated by illness or injury; also: physically or mentally impaired that substantially limits activity especially in relation to employment or education.” It’s a more authentic, less emotionally loaded expression. 

Indeed, as a graduate student in the Developmental Disabilities graduate program at the St. Mary’s University of Minnesota, my peers and I were instructed about the appropriate language to use when talking about someone with a disability. “Why not just call it like it is!” my professor exclaimed. “The person we’re talking about knows they have a disability. Why couch it in euphemisms on the off-chance that the individual who uses a wheelchair doesn’t know they have a disability?”

Armed with this new idea I made it my business to use the word “disability” every chance I got. On conference calls and meetings with colleagues who spoke about serving children with special needs, I would make sure that my next comment included the term “children with disabilities.” 

Is there a special word we can use to soothe our “what do we call them?” anxieties? Probably not. So let’s not try to make ourselves feel better about other people’s disabilities by calling them “special.”

Shelly Christensen, MA is one of the leading authors, speakers and practitioners of inclusion of people with disabilities in sacred communities. As Program Manager of the award-winning and cutting-edge Minneapolis Jewish Community Inclusion Program for People with Disabilities since 2001, she has successfully worked to change the culture in synagogues and the Jewish community. In 2009 she co-founded Jewish Disability Awareness Month (JDAM) with the Jewish Special Education Consortium. Shelly and her husband Rick are the parents of three sons, one of whom has Asperger syndrome. She has personally navigated the Jewish and secular communities with passion for meaningful participation by people with disabilities and their families.

 

Comments

I just want to thank you for sharing all the information about the Spectrum and I am also sharing same sentiments with Nancy and Leslie.Keep it up by sensitizing the world about Autism.

I totally understand where your son is coming from. The only use I have for labels is to make sure my son gets the services that he needs. I am afraid that without the official label (diagnosis) of Autism, he would not get the services from school and the state that he is entitled to. I know that I am being a skeptic, but personal experience has dictated that labels are not the problem, attitudes toward those that look different are. The minute my son starts to behave differently, everyone looks the other way and gives us a wide berth. There is a book by Richard Lavoie called "Its So Much Work To Be Your Friend: Helping the Child with Learning Disabilities Find Social Success" hits the nail on the head by saying that these children are socially out of step with their peers and society, which is where the stigma comes from. It really doesn't matter whether we call it Aspergers, autism, special needs, disabled, or even positive labels such as gifted, unique, and the exclusive club for sensory different individuals, the stigma will still be there. My hope is that as students become more and more mainstreamed the stigmas will become less and less and society won't be afraid of these kids because they will have been in their classrooms. Once that happens the issue will be how to sensitive the older adults who did not grow up in integrated classrooms.

Agree entirely. 'Disabled' it is. Thank goodness we've stopped referring to humans as 'handicapped'.
A door or parking spot cannot be 'handicapped' either - they're either accessible or not accessible to everyone.
So while we're on the topic, please replace 'handicapped' with 'accessible' for parking spaces, apartments, transportation, doors, venues (restaurants, sports, arts, hotel rooms), etc.

We learned very quickly that an automatic door + a ramp, instead of steps, was accessible to those who were pregnant; elderly; had a short term injury resulting in broken bones, crutches, canes; and those loaded down with groceries, small children or strollers. We think all new apartment buildings + most buildings should have outside ramps.

I appreciate this article. I have devoted my life to people who have different perspectives especially those children on the spectrum. After decades of working with this "group", I have found that this group is made of individuals with unique views, needs, values, strengths, that any other group does. It has been hard for me to say that their perspective has been less or disabled. I have gained far more from this group of individuals in my lifetime than any other group of individuals that I have associated myself with. I have discovered that they generally use a part of their brain that a large part of the population does not access. Kierkegaard wrote about how anxiety was an avenue to creativity when used correctly. We label anxiety as a disability and medicate to get rid of it. I suggest that we offer coaching on how to manage anxiety so it is our tool for creativity. This is an example how Aspergers is not a disability but a gift that simply needs management tools. Who doesn't need management tools. Daily we see post through social media on those who do not know how to make a point without offending. Do we say they are socially disabled and need a program? No of course not, we call them a jerk and move on. But that person could use some coaching in social skills. The point is that people are disabled by who is defining. We need to stop making assumptions about what people should be and start appreciating the gifts we receive and work together to promote our gifts. Our children are our future. I have taught children who werent talking to talk. I waited til they wanted to talk and searched with them for reasons to talk. We have to look at the person and ask ourselves about what our role is. We each participate. Stop making assumptions about each other what we should and should not be, embrace each other strengths, appreciate differences, accept our weaknesses, and work together. When I coach children in this path they succeed but I also grow, learning from each experience. So who is disabled? The person who cant see the gift!

Beautiful insight. As the parent of a disabled young man, I totally concur with your point of view. Thanks for sharing it.

Thank you for your insight and correct assestment Jacob. Labels are the definer for many of who we are. For me, my lable comes when folks see my crutches. They assume for me the label of many disabilities. I get spoken to in simplistic form, loudly, and even have them lean into my personal space. My problem is orthopedic. I have long stated that we are all one people, with the same desires, heart, and mind, and to remove the label would allow th vision to see that. The ADA is hailed as costly "forthose of a label," but, if we thought andrespected each other in the heart we all have, and saw each other for our values, and that was the norm, the upset and lack of doing for all those people ....the "special needs!" what more do they want would be ...what is that we need for common sense for all of us. You are a wise and compassionate person, and I hope that you endeavor to advocate and write, your good heart may light up the world.

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