Why I want you to see my child’s disability…

This is something that has been on my mind for awhile. Trying to articulate my thoughts has been tough.

As a community, a phrase that we use very often is ‘more alike than different’. We want the world to know that a person with a disability has far more in common with a typical person than not. Ivy may have an extra chromosome, but she laughs and cries. She adores her family and her doggies. She loves to swing and splash in the bath. Her similarities vastly outweigh her differences.

But here’s the thing. People will say to me “Ivy doesn’t even look like she has Down syndrome.” They think they are paying me a compliment; that I don’t want them to notice that Ivy has features of Down syndrome. That by saying that they mean she looks ‘normal’ and shouldn’t I be relieved.

Here’s the crux of the problem. To most of the world, disability is bad. It is not normal. It is something to be pitied. The thought that I could truly not want to change a thing about Ivy is a completely unimaginable thing to many people.

Yes Ivy has Down syndrome, but of course I don’t want that to be all you see. I want you to see that she is sweet, stubborn, and silly. I want you to notice that just like any two year old she loves her family, swimming, and music.

BUT just because I want you to accept that she is more alike than different, it doesn’t mean that I don’t want you to see Down syndrome. Because that extra chromosome is just as much a part of her as those other things. And it’s not a bad thing. It’s beautiful. I love that extra chromosome. It gives her tenacity. It gives her those gorgeous and sparkling almond shaped eyes. It has given her medical challenges that have made her strong and brave. Of course I don’t love the medical challenges themselves, but they are a part of her and we’ve overcome them together.

Right now her disability means that we have countless appointments and therapies. It means that she requires physical supports like SMOs (foot braces), a gait trainer, and a walker. It means that she is fully G-Tube fed which comes with a lot of equipment and hurdles. It means that at 2 years old she cannot communicate with words but is learning sign language. Acknowledging her disability looks like planning for her needs when we go on outings. It means planning for her feeding needs. It means learning sign language with her so that she can communicate with all of the important people in her life.

As she grows, there will be parts of her disability that will bring bigger struggles. Communication struggles that may manifest in behavior outbursts. Low impulse control. Elopement. These are parts of her disability that can’t be ignored. They will require supports in place at school. They will require empathy and understanding from people who encounter her in public spaces. You can’t ignore her disability or pretend that it doesn’t exist. It is a part of her. It will always affect our lives. It doesn’t mean that she should be secluded or ostracized, but to imagine that she should be treated exactly like every other child is just not possible.

Of course, in the ways that matter – love, friendship, respect, connection… she should be treated just as all people should regardless of race, gender, ability, or any other difference.

Recently in a podcast I heard a quote that deeply moved me. It speaks so much to this subject.

Treating different things the same can generate as much an inequality as treating the same things differently.

-Kimberle Crenshaw

Just sit with that for a moment. It is deep. It took me some unpacking to understand all the layers. People can end up getting it so backwards.

Treating different things the same – to me that speaks to Ivy’s disability. The needs that she has that cannot be treated the same as other kids. It is why she has an IFSP (individualized family service plan) right now and will have an IEP (individualized education plan) when she turns 3. This is the reason that I want you to see my daughter’s disability. She has different needs that just cannot be treated the same as her typical peers. And that is OK!

Treating the same things differently – to me this speaks to Ivy’s humanity. Like I said before, she is more alike than different. She is human just like you and me. She has the same basic needs for love, communication, respect, and connection. She deserves to be included in her world. Her disability should not take away from that.

As I was working through all these thoughts it struck me that they also apply so much to race, sexuality, religion… really any way that there is diversity in humanity. We cannot pretend that BIPOC (black, indigenous, people of color) have had the same lived experience that we have. We know that white privilege exists. Therefore we cannot treat those different things the same. We need to be conscious of our bias. We need to dismantle systemic racism.

And just like people with disabilities, BIPOC and people in the LGBTQ communities are human. Their humanity is the same as any other person on this planet. We cannot treat their humanity any different, though unfortunately it happens every day. They have the same basic needs of love, connection, value, and respect. We cannot treat people who are different than us as any less, because they aren’t.

In the end, what I really believe is that we need to acknowledge and appreciate every difference in humanity. We need to treat all people with the same respect and give them the same value. But we also need to see the differences to be able to account for them in important ways. We need to see the differences and realize that they are beautiful!

I’d love to hear your thoughts on this subject… please leave a comment!

2 Comments Add yours

  1. Tori Sloane says:

    Beautifully said. Thank you for sharing this !

    Like

  2. Allison Fochs says:

    As someone with a mild chrosomal disability. I think that was a very well thought out piece. I have been through the “ I don’t seem like I have a disability .” I love working with children and my dream since I was in Kindergarten was to be a Kindergarten teacher and I got decent grade to good grade in high school and a resource teacher, thought that with my grades that I could be a Kindergarten teacher but my mom was holding me back and make to big a deal of my disability. In reality, I could get decent grades(B&C mainly) but I have come to realize that especially with writing and spelling.. That some of my good grades were because I was a well behaved , engaged, enthusiastic student instead for the product because my writing sucked and when I realized it after high school (at college) I couldn’t get help with my obvious learning disability because I was diagnosed EBD (instead of LD) which I was at 21 and I was able to go a residential college for people with learning disabilities. So being nice and compliment can backfire. So keep being a proud but realistic parent.

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s