My daughter is three years old. She has Spinal Muscular Atrophy, and she uses a wheelchair.
We were once told she would not live past the age of two, so in many ways, using a wheelchair is the least of our concerns (a blessing, really)! But in other ways, it seems we are at the beginning of a long, winding road of advocating for inclusion at every turn.
I’m still relatively new to this world of special-needs parenting, so my lessons are raw. My eyes are opened every day to ways the world treats those with differences. So I proceed in humility to share what I’ve learned, and I hope that it enlightens some of you, too.
Moms who have been doing this much longer than I have: I admire you. You give me strength on hard days. And to the adults reading this who live with disabilities: Thank you for paving the way. Thank you for living boldly and using your gifts, and for never giving up.
Inclusion Is More Than Just Being in the Same Room
This is the area where I continue to find myself both baffled and inspired.
Children have no trouble being inclusive. Everywhere we go, children find a way to play together. Older children go out of their way to include my daughter. Recently, a sweet neighbor took it upon herself to help my daughter swing a bat at the piñata at a birthday party.
Adults are the ones who struggle with this concept. Mostly because inclusion requires creativity and extra work.
We are so used to doing things a certain way that we have a hard time thinking about things differently. And the thought of doing MORE work, for just one child, makes adults feel tired. (Believe me, I know!)
So they give up, cite specific policies or rules, and try to point you to a “special-needs” class or group. End of conversation.
But what if, instead of trying to push children who are different aside, we asked ourselves, “How can I do this? How can I make this experience great for everyone? How can this enrich the life not only of one child, but of all the children who are in this activity together?”
It may look different than you expected. It may require us to think outside the box or do some extra work — but in most circumstances, it is possible. And I want to raise my daughter in a world of possibilities.
Can we start thinking about disabilities in a new way? Can we help each other make things work? Can we invite children to birthday parties where activities seem challenging, but find a way to include them anyway?
These are the things I am constantly tasked with as a mom. Sometimes I just wish I had more co-laborers helping me along the way.
Advocacy Isn’t Optional
When you’re a special needs mom, advocacy is not an option. We see the injustices, the inequalities every day. Others just don’t. So if we want to see a change, we have to be the one to ask for it.
It doesn’t matter that we don’t have time, that we are working multiple jobs to help pay for our family’s needs, or that we are exhausted. If we want to make it happen, we have to do it. Raise the money. Petition the system. Build awareness.
This alone has been a hard lesson for me to learn.
I think this is the reason special-needs moms sometimes get a bad reputation. Like we’re always “fighting” for things, or angry with others for not doing their best for our child. Or we’re just emotional and tired.
We may be all of these things at different times, but it’s because we love our children deeply. And we want them to have the same opportunities as other typical children do.
For us, requesting the same — providing the same — requires “extra.” So we have to be the extra for our kids. There’s just no way around it.
Accessibility Is a Loose Term
The world is not an accessible place. If you’ve ever pushed a stroller through a shopping mall, you probably realized this when you discovered there is only one elevator, and it’s approximately one mile out of the away.
Stores, restaurants, homes, and most buildings were just not designed with wheelchair users in mind. They may say they are accessible, but that doesn’t mean convenient or always even appropriate.
We’ve entered buildings through trash entries and back doors, and we’ve taken long, dark hallways to get around a staircase. We were once told by mall security that our daughter’s medical stroller was “blocking other children from accessing the play area” in a public play space. The stroller that she was sitting in, in the space where she was also playing.
You may think that making the world accessible is impossible, or that it’s just another one of those pie-in-the-sky ideas. But I challenge you, if you are a business owner or leader, or simply if you want to include people of all abilities in your space or organization, think about wheelchairs. Will they fit? Can they get in? Is what we’re asking wheelchair users to do appropriate?
I think about it all the time. And if one in five people in the United States has a disability, it’s probably time that others started thinking about it more, too.
To Be Continued . . . .