Evolution of a Special Needs, I mean Disability Mom

I would like to announce that I am finally rebooting The Special Needs Spotlight, except that I would also like to announce that  instead of it being called “The Special Needs Spotlight” it’s going to be called (for now) The Disability Spotlight. I’m going to be taking the term “special needs” out of my lexicon and I’d like to explain why.

As parents in general, we are constantly evolving. From having babies, to toddlers, to kids to tween and teens. As our kids learn and grow, so do we. Hopefully. Over the past 9 years as a parent to a child with a disability, my views have shifted radically. I’m not the same person I was before–yet I AM (so weird)–and I try my best to keep up.

In the very beginning of our “journey” I was just a mom loving her new baby while trying to take it all in–the limb differences, the doctors’ appointments, the g-tube, the explanations to children everywhere, the sibling relationship, etc. I was treading water and surviving day to day. In the beginning what I most wanted to show the world was that we were not sad our daughter had a disability. (And yes, to be clear I have never shied a way from the word disability.) She wasn’t a burden! She wasn’t tragic! She was uniquely beautiful and I was so proud to be her mom. I wanted EVERYONE to know that the fear I once felt about having a child with a disability was wrong.

But that same desire to share what I was now learning also gave me away. It oozed of ableist sentiments that of course centered the able-bodied experience as the be-all end-all. It took a while for me to see that my daughter’s body and the disabled point-of-view that would be hers from birth to death was not a deviance from the one correct way of being–able-bodied–but rather, just another variance in the vast human condition that was just as valid and normal as anything else. Not normal as in “common”, but normal as in “part of the plan.” A type of humanity that was always meant to exist–in other words, disability is not a mistake. At least, not inherently.

And that was another part of my learning curve. I was so desperate to show the world that disability was good and right and awesome and and and that I had to one again sit and down and listen and realize, sometimes disability is hard, sad, tragic, and yes maybe even a mistake. But like everything else in life that falls under those categories, good can still grow from that rugged soil.

I have gone from learner/outsider, to teacher and advocate. Mostly by sharing the stories of other disabled families and individuals with disabilities by providing a platform here on my blog, where we could all come together and learn about the unique branches of this unique human experience. That’s where it started. And moving from parents of a child with a disability to first-hand accounts from disabled adults themselves was where the real shift in perspective started changing for me, and I hope for others.

And as I listened to more people and their perspectives other aspects of our life and my daughter’s life came into focus. The lack of representation and accessibility in particular have become big themes for me. And because I came to see how important disability representation is in the moving the rights of disabled people forward, I decided to write a children’s book, When Charley Met Emma, that prominently features a little girl in a wheelchair with limb differences. It’s been absolutely amazing to see people’s reactions to the book and how it has helped parents have candid discussions about disability with their children.

I’ve learned a lot. I’ve grown a lot. And I hope I’ve contributed a lot.

But here’s the thing of it all: I am not disabled. My daughter is. Not me.

I think we can all agree this is not a newsflash, but it is becoming more and more of an awareness for me as a disability advocate. I need to try even harder to elevate the voices of disabled people themselves and at the same time still balance my role as parent/advocate for my daughter. At times this burgeoning awareness has felt uncomfortable for me. I believe there are some disability advocates who don’t want to hear from the parents of kids who are disabled–that is at least my perception–and it hurts a little. I have felt defensive at times. I want to explain myself and assure people that I “get it.” But deep down I know I will never truly get it. Unless I become disabled (a decent probability) and even then to have gone 40+ years in life without a disability is still not the same. My friendships, education, and job opportunities weren’t conducted through the lens of disability.

But I don’t need to be defensive. The experience of a disability parent is valid. And in the beginning, like all parents, we ARE our children’s advocates. It’s important we learn to speak up because our voices will make all the difference in our children’s world until they are 100 % able to speak for themselves. (And keep in mind, some people will never be able to speak for themselves–I don’t just mean verbally. Some disabled people cannot communicate their needs and wants and will always rely on a caregiver–hopefully one who loves them.) Therefore, most of us parents have to start speaking on behalf of our kids long before any awareness of our own prejudice and ableism. But we do it out of love and the seed is planted there. And hopefully in this internet age we are learning faster than our predecessors the importance of not seeing our children as humans-gone-wrong that need to be fixed (medical model of disability) but rather we see that our children and other people are only as disabled as the world around them forces them to be with inaccessible spaces and inaccessible minds (social model of disability.)  I can be an advocate while at the same time recognizing the importance of supporting and raising the voices of disabled people directly. This is a community effort and it will take every single one of us. I don’t want to stop doing the work I do, but I can do it better.

Thus, no more “Special Needs Spotlight” or even referring to myself as a “special needs” mom. I had my reasons for keeping the term “special needs” around–it felt like a big umbrella term that encompasses more than just disability–things like medically fragile children or people with severe allergies. Also, people know what it means when I say I’m a “special needs mom” as opposed to I’m a “disability” mom. But still, I couldn’t ignore the fact that most disabled people really dislike the term “special needs” or, even worse “differently-abled.” (Yes, I used to use that one often too. Again, it felt OK because Lamp writes with her feet! She has different abilities!) Both terms are euphemisms and when people use a euphemism to describe your person-hood, that means they believe there is something inherently wrong about your person-hood. Additionally, as some have pointed out their needs are not special. They are the same needs we all have and by claiming them as “special” we make it that much harder for them to access those thing and/or it makes it seem like we are doing disabled people a favor when we meet their needs.

Right now I’m simply referring to it as “The Disability Spotlight,” but as I’d love to have a name that also spoke to other things like medically complex people, who aren’t necessarily disabled. So I thought about I’d open the floor up to you and ask for your ideas. I’ve thought about the Disability and Unique Human Experience Segment (remember when I did a trans interview last year? A name like this could cover a wide range of experiences.) but it feels a little wordy. So please, if you have an idea for the the “Disability Spotlight” I’d love to hear them below!

ALSO, if you or someone you know would like to be a part of the Disability Spotlight please email me or have them email me at thislittlemiggy at gmail dot com and LET’S GET THIS PARTY STARTED!