Confession – I’m not that good with people first language

17 Nov

Yeah, I know, that makes me not a good spokesperson.

Seeing as I’m not getting paid to be a spokesperson…I can live with that.

Maura has special needs – that’s our quick and easy way to explain her issues to strangers. Strangers who don’t need the whole saga of being undiagnosed, her speech issues, her strabismus that’s also pseudo-strabismus, etc, etc, etc.

I have a special needs teen – because sometimes, I just don’t have time to type out “I have a daughter who is a teenager living with disabilities…”.

“Special needs” and “disability” IS part of Maura’s definition. There is NO shame in that. It’s just part of who she is. Just like I can embrace my role as Anxiety Mom (which totally comes with a cape, btw, which I worry about getting caught in things.)

I could say I have a daughter with disabilities – but society still sees “disabilities” as that wheelchair symbol. You know the one –

handicap-759184_640

The fact is, Maura isn’t really physically disabled. Explaining her cognitive disabilities would require a different kind of symbol, one that has yet to be discovered.

 

I also use the phrase “special needs” in regards to things like Maura (“she has some special needs”) or as a self-descriptor on the internet (“I’m a special needs mom”) because people get it. People don’t question it. And it’s the shorter, easier to say version of “She has moderate cognitive disabilities with some minor motor skill issues”.  Because that <—? That is what we have in the “label” department.

Now, pause and think about all this yourself. When you hear “disabled”, what comes to mind? The wheelchair symbol? The elderly person with a cane or scooter?  A Paralympian?

Do you see someone who doesn’t have anything physically wrong with them?

My daughter doesn’t look disabled even though she’s pretty darn disabled according to paperwork. According to my daughter, she’s pretty darn abled, and I completely agree with it.

However, I could get criticized by the disability community for using the phrase “special needs” and “special needs mom”. Apparently it’s a no-no. And in the autism community, there’s the big “people with autism” vs “suffering from autism” vs “I’m autistic, I will call myself autistic, stop correcting me in how I call myself!” (no, seriously, it happens. People get so gung-ho on people first language that they correct actual autistic people for calling themselves autistic.)

Here’s the thing – at the end of the day, the order in which you put these words don’t matter as much to me as how you treat my daughter. Do you treat her as a cognitively disabled person…or as a person? That’s the “people first” part that concerns me the most.

 

 

 

 

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4 Responses to “Confession – I’m not that good with people first language”

  1. Cheryl-Lynn November 17, 2016 at 2:33 pm #

    Well said! I find myself correcting teens who call our helpline who do not have a disability and using some “labels” as verbs or noun. For instance a youth complained about a friend who got upset…her words, “flipped out and went all bi-polar on me”. However, I would never think of correcting someone who has a bi-polar condition and says it. Just like I may say, I’m getting fat or I am overweight…I know I am and don’t need to be corrected. I should know! I get on the scale (not too often); I see the 3 to 4 sizes bigger my clothes are.

    The “disability” sign with a wheelchair is also a hot topic…people expect someone walking out of there to be in a wheelchair or crutches. A woman shared how she felt embarrassed when someone saw her come out without crutches or wheel chair, snickering at her. Giving her the “look”. That woman did not need to explain to her that she had Crohn’s disease.

  2. anonymouslyautistic November 17, 2016 at 3:45 pm #

    It’s ok. I MUCH prefer Autistic person to person with Autism anyways. Since I can’t put my Autism in a bag and leave it behind, I am my Autism in a lot of ways. It makes me me.

  3. Renee Anne November 19, 2016 at 10:56 am #

    It was a hot button topic even when I was just starting in college 18 years ago. The takeaway I got from it all: ask the person how they prefer others refer to them and if they cannot advocate for it themselves (like Maura), ask their parent/caregiver (of course, a caregiver may not always be a parent and may not always agree with the parent on how to refer to someone with any sort of disability/special need). In our house, we refer to Little Man as Little Man. His genetic disorder doesn’t even come up unless there’s a reason (like hospital visits or for his 504 Plan).

  4. Alicia Rowley January 8, 2017 at 10:00 pm #

    It’s obviously a matter of personal preference. Nobody has any right to correct a person who actually has the disability on how they chose to refer to themselves. I have a disability and do personally prefer person first language. That being said, I don’t fuss over the difference between saying someone has special needs or they have a disability. To say your child ‘HAS some special needs’ is in fact already using person first language, regardless of the use of the term special needs vs disability. Person first language is simply saying she has it, not that she is it entirely.
    In my experience, there does seem to be some divide in physical disability and cognitive disability. You are right in that it seems that most often the term special needs is used to refer to cognitive disability whereas disability is commonly used to describe visible or physical disabilities. So although the term special needs is not preferred by some in the community, I think if you feel it best describes your child there is no problem in using it and it does not have to conflict with using person first language.
    Not here to cause debate or criticize your parenting or you and your daughters term preferences. However, I do think this is something to consider; words are very powerful. I am sure we can all agree that the goal is for all people with any type of disability to first and foremost be treated as wonderful, valuable, complex people deserving of dignity and respect. The reason for person first language is because the words we use to describe people in the long run impacts the way we think about and treat people. Person first language isn’t necessarily there for people like our moms who already know us and love us and see us as complex individuals. We encourage it because growing up we hear things like ‘look at that poor disabled kid.’ In this way people see our disability first (and often that’s all they see.) In this context disabled is usually used in a negative context, people looking down on us. If we can shift people’s language to saying we HAVE disabilities rather than we ARE disabled, our hope is that it encourages people to think of the other things that we are. Disability is definitely part of our definition – a big part, but it is only part of it and the other parts are worth looking at too. If we want to change how people with disabilities are treated, I believe a major part of doing that is changing the way we describe them.

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