An Open Letter to Parents of Kids with “Special Needs”

Dear Friend,

This letter isn’t about appreciating your child. It’s not about loving your child, it’s not about protecting your child or about fighting for access for your child.

 I know you do all of that already.

This is also not about pointing fingers or trying to shame or make you feel bad.

 You don’t need that.

But I want you to understand something. I want you to understand that equal access for your child needs to spill over to equal access for everyone with a disability.

How can you say that closed captions “cost too much” and dismiss the subject – then in the next breath, talk about the supports your child has a right to receive in school?

How can you host an event which is held on the second floor of a building which only has stairs – and then talk about the discrimination that your child faces?

How can you suggest to meet in a loud, crowded, busy restaurant – and then be upset with the lack of consideration  shown to your child?

These signs have faces behind them.

a little moxie collage of disability signs

They are symbols of people, real live people. People who yearn to be accepted, appreciated, contributing, loved. People with hearts, brains, strength and ability.

These signs represent people like ME; people who are included in the conversation up to the entrance – then the door is slammed in our face because we can’t get through the door.

And we can’t access it because it’s not convenient for you.

So you let us stand outside and call that friendship.

Why then should the school district, an employer, a friend, a family, anyone make accommodations for your child? Disability is not usually convenient, is it?

Please….I want you to think about the broader picture of access and inclusion. I would love for you to think of it in the way that you want people to think of your child, the way that you want the world to include your child.

I know you try. And I know you care.

Which is why I am writing this: if your actions are only going to include access and accommodation insofar as your own child is concerned, then you are not truly contributing to the disability rights movement.

To use an analogy: it’s like your child is black and you have worked to allow your child to drink in one “whites only” fountain – but every other black person needs to wait by the wayside, thirsty.

It’s when we think about all disability, it’s when we try and make our society fully accessible for all, it’s when we open our own arms and thinking and include all and make sure that no one – NO ONE!! – is left out that we are affecting change on a societal level.

That’s when we are really practicing what we peach; that’s really walking the talk.

And then – only then – will no one be thirsty.

Then – and only then – can we move forward as one, an equal society with a culture that stands by all.

moxie striving for access - alittlemoxie.com

 

Meriah

is a deaf blogger, global nomad, tech-junkie, cat-lover, Trekkie, Celto-Teutonic-peasant-handed mom of 3 (one with Down syndrome and one gifted 2E).

She likes her coffee black and hot.


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15 Comments

  • You are so right, Meriah! We should all stand together! But often it is also the other way, that people with a physically disabled (hope this is the right word…) don’t want to be mixed with people that are mentally disabled. Everyone is only fighting for themselves.
    I hope we can change the world just a little bit 🙂
    Katta

    • Absolutely,Katta, within-disability discrimination and prejudice is a real issue. It’s a separate issue from this one though… I wrote this because I have personally experienced this type of exclusion from parents of kids with disabilities. It’s as if fighting for an inclusive and welcoming world is fine and desired so long as it’s for their own child and/or so long as it’s convenient or doesn’t cost too much money.

      • I understand you very well, but sometimes I can’t express this in good words… If we want to have an inclusive world, it means that really ALL people are welcome and that we find a way to include them all to everyday life. I want to live in this kind of world, I look over the rim, because I don’t want a better way of life for Aila, I want her to live in a better world, where everyone is welcome.

  • Hi, I’m your reader for a really long time, and I’m in Mexico Morelos right now, have lived for 9 years, 1 year in La Paz Baja (but I’m from Brasil) if your family need something or have some questions just let me know at burzmx@hotmail.com, I will be glad to help you

  • Great post and certainly makes me more mindful as I am new to this advocacy thing. If I am going to fight for special needs, I need to fight for all of them! I am learning more and more that to change the way the world sees my child, we need to become a culture that is willing to step outside of themselves and step into someone else’s reality even when it doesn’t directly affect them. Inclusivity is a way of thinking, not a list of rules.

  • Yes. I like this, I do.
    I have been thinking about this advocacy business a great deal lately and working up to maybe posting something about it (probably not, there’s… coffee, knitting, gravlax, furry pups). A couple months ago I attended one of the Wright’s Law workshops for professionals and parents. It was a good thing, of course it’s important to know how to advocate for your child, but it also made me realize how much we tend to let our personal advocacy efforts bleed into and overshadow what really are much broader societal questions, that more often than not don’t have any direct benefit for us or anyone close to us but that might actually require a sacrifice of some kind from us, even a small one like putting in extra thought (over-thinking it for *everyone’s* benefit). And we call it all ‘advocacy’. After the workshop I’m really left wondering how much of advocacy is actually advocacy and how much is knowing how to ‘play the system’ and whether that should even be referred to as advocacy (probably not). I mean, obviously the goal is to make individual lives work, but when does that actually inhibit larger shifts, you know, and how do we strike a balance?

  • I was concerned with receiving medical care for my daughter; THAT was NOT granted to her because of her special needs. She DIED because of this, I fight for awareness of what she had and for others like her to receive the MEDICAL attention that EVERYONE deserves.

  • Love your perspective here. It really made me stop and think about what I’ve done in the past advocating for my child (18yo daughter with moderate cerebral palsy and uses sign) and if I’ve done some “anti-advocating” for others. Shared the link on Twitter and now following you. 🙂 (Visiting from Love That Max LinkUp!)

  • OMG – I have a disability and I worked with parents of special needs kids. I have to say that I never felt as discriminated against by any other group as I did by these people. I finally just shut down for a while and am
    now looking for a different line of work. They yell and scream about their kids being given a chance but then don’t extend the same to others. (not all parents of course but enough)

  • I get the gist of this post….really I do. I spend a great majority of my time educating and fighting for inclusion for everyone but especially those with Down syndrome, because that’s the disability I am most familiar with and knowledgeable about, but I have to say that I just don’t get the picture chosen.
    If people who use wheelchairs need a specific incline in order to safely use a ramp, why get bent out of shape (LOL! NO pun intended!) that the access for people in wheelchairs can’t extend in a straight line out of the entrance and needs to be off to the side (especially when access is made to an existing building)….it’s simple geometry. It has to wind it’s way back and forth in order to fit in the same space. Like my daughter’s education….it needs to fit in the prescribed ‘space’ but there needs to be some winding of the ways (accommodations and modifications).
    I’m opinionated, friendly and chatty as well….and I’d love to hear some additional info and perspective on the photo choice….(BTW, I haven’t read your bio, but I’m gathering from the post that you use a wheelchair ? ;>)

    • Hey Julie,

      Your comment made me laugh – no, I’m not a wheelchair user! I am deaf, with TBI, PTSD and bi-polar disorder. Everything about my disabilities is non-visible and I usually have to tell people I am deaf for them to know because I lipread and speak very clearly.

      the photo choice – let’s see, I posted this a while ago (and I do have TBI, which means my memory is horrible) – I used the one of my face, right? I made that to make it seem like it was broken. Oh no, wait – that was the “broken disabled” post. Sorry. Okay, that was the one of Moxie climbing the stairs? I used that because it’s about access and access is simply an issue point blank. I liked it because it had her struggling up the stairs with the sign pointing for the disabled to go around the back of the building.

      This post wasn’t about geometry – it’s about overall access. It’s about being included in an integral way.

I'm opinionated, friendly & chatty... I hope you are, too