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 –
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.