spe·cial
adjective \ˈspe-shəl\
: of a particular kind
: peculiar to a particular person, thing, or purpose
: unusual, exceptional
: especially important or loved
– New American Webster Dictionary
Back in the days when I had time to write more than one post a month and actually read other peoples’ blogs, I came across somebody’s post suggesting (boldly, I thought, and perhaps rashly) that special needs aren’t special. And I couldn’t figure out if I was offended or simply indignant, but I do remember thinking, That’s ridiculous. Of course special needs are special! In school my son needed full-time, one-on-one assistance in the classroom – that’s a special need! For years my son needed laminated cue cards in order to communicate – that’s a special need! At age 19, he needs me to keep track of all of his appointments, finances, medication, and hygiene – special needs, I tell you. I could not see how anyone would think otherwise.
But due to the fact that my son, who has autism, among other disorders, recently said this to me: “I don’t like it when you say ‘special needs’ or ‘developmental disabilities’ about me. It makes me feel like I’m incapable of doing things,” I have spent the last few months trying to find an acceptable alternative (since he vetoed ‘differently abled’ and asked, “Why is it so important to you?” when I pressed for his preference).
And so I refrained from saying “special needs” in his presence even though I continued to use it when he was not around. In all honesty, I’ve never really liked it. After all, “our” kids are not any more special than anyone else’s kids, or our other children who don’t have disabilities, for that matter. But some of our kids’ needs are special. Of that I was certain.
And then last month I started attending the Partners in Policymaking program. A 6-month leadership training program for adults with various types of disabilities and parents of children with disabilities, it exists in 46 states. Partners in Policymaking makes participants better advocates for themselves, their family members, and the greater disability community. I highly recommend that everyone should attend it at any point in their parenting journey. Why? It will rock your world. It will turn everything you ever thought about disabilities and “special needs” upside down, no matter how many rodeos you’ve been to.
So why aren’t special needs special? Because we all have the same needs. I know this is revolutionary, so bear with me. We all need to:
- Be loved and appreciated for who we are
- Be safe, well, and comfortable
- Communicate
- Get around
- Have autonomy
- Have friends
- Have a creative outlet
Some of us can meet these needs without any assistance. And some of us need support to have these needs met. But that doesn’t make those needs special – because they are the same for all of us. Some children (or adults) need assistance so that they are safe (tracking devices, locks and gates), comfortable (weighted blankets, sound protection, head support, etc.). Some need support with communicating (voice devices, iPads with apps, PECS cards). Some require a power chair, medical transportation, or other assistance with getting around. But the need is to get around, the need is to communicate, or be safe, and those needs are not special. We all need them, unless we want to say that we all have special needs.
My son requires support in meeting several different needs, but the needs themselves are not special. I have the same needs! I just don’t need assistance in meeting them (most of the time). It may have taken me a while to get to this point, a point where I’m ready to embrace an idea that just a few years ago made no sense to me at all, but I’m here. And I’m here because my son told me, in no uncertain terms, that it was time to change my entire way of looking at his needs: “It makes me feel like I’m incapable of doing things.”
I’ve been in the parenting trenches a while now, feeling like I’ve earned some kind of a badge, like I’ve got this. But the old adage is true – I’m learning that I still have a lot to learn. And I probably have at least a few more rodeos, too.
Image courtesy of Wireandtwine.com
Glad you are back on the blogging scene, Tanya. Interesting and sensible words both from you and from your son. Certainly here in UK the term “special” was coined to replace other tags that began to be offensive to people. I think it goes in cycles, and at its best “special” is a euphemism used to avoid offence. I do think specific vocabulary is helpful for people to use about themselves in explaining themselves in a rational way, but these tags so quickly become mindless jargon. The way I choose, at the moment, to understand how my three form part of society’s Whole is to think of all our brains a bit like the old fashioned circuit boards that went into transistor radios – some of us are wired differently, and that variety makes for a more interesting and creative Whole. I look forward to reading you Tanya; your writing always feels authentic and open-hearted.
Thanks for your comment, Dawn. I completely agree about the euphemism. This
course I’m taking is really opening my eyes to how disability has been viewed for generations. We’re doing better, but we have a lot farther to go. I appreciate your insight and input!
I find myself also saying things that sometimes bother me for saying them…but I can’t quite wrap my head around ‘how” to properly get across what I need to say without saying what I do. Geez, I am confusing even myself…but though some people claim that terms are derogatory, I think as parents of these kids with needs, we have to say what we can to get our point across or we aren’t heard. Sometimes, using those not so acceptable terms are the only thing that gives us a voice. Sad? Maybe, but we still gotta do what we gotta do and then in our free time (ha) figure out ways of changing those terms to be more accepted and acceptable for society and our kids. I never seem to get that far. I am stuck in my own head with too much guilt, fear and sadness. That’s not very accepting, but it is what it is. Those tiny jumps just don’t feel like enough for me to cheer about. I need to learn total acceptance. I still struggle with it deeply.
Tanya, this is a very important distinction that you make: We ALL have the same needs, but some of us need ASSISTANCE in meeting them. This point will be helpful for me personally to be aware of in the course of my job. I often have people calling to request ADA seating for a show, but don’t specify what they need it for. It will help me to remember to ask what assistance I can provide, as opposed to asking what their needs are.
Hi Tanya, Very interesting post, especially because the name of my blog, I guess we are looking for that “umbrella” term that applies to the mass. I really get where you are going and definately get Neil´s message loud and clear. I feel the same with my son, I can read it in his face, when I´m assisting him. It´s fantastic that Neil can express his feelings so well.
beautifully done… and you are right we are all special even though we may need assistance in different areas along the way.. xoxo
Great post! It seems like the phrase “special needs” separates “Us” and “Them.” There are so many different ways to have special needs, including mobility, sight, health, intellectual, hearing, emotional, mental health, etc, etc, etc. But underneath, we all really do have the SAME needs, and if people focus on that sameness, we can concentrate on helping each other, instead of focusing on who is “special” and who isn’t.
[…] I go to our state capital for a six-month course I’m taking called Partners in Policymaking (more about that here). It’s a four-hour drive one way, and I do this every month, so that I can learn how to help my […]
My partner ( a grade 5 teacher) has often said, wouldn’t it be wonderful if we all had an IEP for our lives. He says his would say he needs two weeks in the woods every summer to recharge…mine would involve quiet, alone time and good coffee first thing in the morning.