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Tag Archives: advocacy

The terms we use

13 Nov

I read a post by a disability blogger I follow, about the use of infantilizing words and phrases we use in lieu of “disabled” – like “Differently Abled” and it’s shorter term “Diffabled”.

I’ve always hated differently abled. Diffabled just is ridiculous.

I got what this blogger was saying, because I’ve seen grown adults do gymnastics to avoid the word “disabled”. Like the one I heard, where the person used the term “special abilities” – I interrupted slightly and pointed out that the phrase they used made them sound more like Superman. My daughter isn’t a member of the X-Men, she is disabled.

The part of the post written by the disability advocate that made me pause was that they considered “special needs” basically as bad as “differently abled”.

There is a part of me that gets it. It is a bit cotton candy of a descriptor, and it’s something that people usurp unnecessarily. “We ALL have Special Needs.” they’ll quip in a show of false solidarity. No Gladys, your preference to mayo over mustard on your sandwich is not the same as my daughter’s apraxia. Thanks for playing.

But there’s a part of me who has had the experience where we’ve had to use it to describe our daughter, and would still use it even though I kind of knew better. 

Why?

Well, part of it is because of society. When you think of the word “disabled” or conjure up a picture of a disabled person, what picture pops up in your mind’s eye? I bet there’s a wheelchair involved, or a person with Down’s Syndrome. Those are the disabilities we’ve come to know as society.

If I walked out of the disabled toilet with my disabled daughter in tow, we will sometimes get a stink eye from those waiting. Because my daughter doesn’t look disabled, therefore, we have no right to use it. Even though she IS disabled.

Society reminds me that my daughter doesn’t fit the visual of “disabled”. 

Add to that, the fact that my daughter doesn’t have a diagnosis. We can’t say “She has autism.” or “She has Fragile X Syndrome.” So we have no label that society can embrace warmly and say “Oh, I’ve heard of that because some celebrity’s kid has that.”

Frankly, we weren’t even allowed to use “disabled” with her for the longest time, partially because we didn’t have that qualifying diagnosis that made her legitimately disabled in society’s eyes. Oh sure, the girl wore ankle braces and was in OT/PT/ST and had a laundry list of issues – but the school kept checking off the box of “developmentally delayed” until it was ridiculous. As the special education director didn’t like spending SpEd money on SpEd students, I’m pretty sure ticking off the “delayed” box meant that they could spend less on her.

But even before that, I had people tell me that I was overblowing Maura’s issues. That she’d be fine. That it wasn’t like she had a real disability like other kids they knew. Doctors at first said she’d probably outgrow her delays. They were, after all, just delays. They weren’t real disabilities. If they were, surely she would be worse off, have a label, have a diagnosis.

You can see how we hesitated to use the term “disabled” with our daughter. Not because we saw it as a dirty word – but because in many ways, we weren’t allowed to use it. 

It wasn’t until we moved to Ireland that we started feeling like it was okay to use the phrase “disabled” with Maura. Mainly because in Ireland, they looked at her and said “Yep, she’s disabled, here’s a school for disabled kids, here’s some disability benefits, what do you mean people in the States didn’t think she was disabled? And what’s wrong with being disabled anyway? Nothing. Nothing’s wrong with that.”

Just like that, we were legit – though I still got a bit of a stink eye coming out of the disabled toilet with her at the shopping centre at Christmastime with the long lines. I swear, we weren’t cheating! She is disabled!

Because at the end of the day, Maura still doesn’t look disabled. We still don’t have a diagnosis. All we have is “intellectual disability”, which is a mouthful and honestly, I don’t think really describes her well. It’s too generic, and doesn’t take into account her savvy ways and cleverness.

Just today though, I came across a blog written by a mom of a child with physical disabilities. And the tag line for it stated how she was writing for disability and special needs awareness. I wondered – if they’re both supposed to be the same, why the “and”? They aren’t two different things.

And just like that, I understood better the disability advocate’s point of view. That by using “special needs”, we’re downplaying actual disabilities. 

Something I should know already because it happened to us.

Or maybe, because it happened to us, I was too close to things, and needed that fresh perspective.

I’ve been working to phase out my use of “special needs” – but I need society to catch up with me, to follow my lead.

So please – I’m asking you – call my daughter disabled. Consider her disabled. Her disabilities are legitimate. Her disability is real even if it doesn’t have a name, or if we don’t know the cause of it. In a way, we’ve worked really hard to earn that label of disabled. It isn’t an insult…unless you think being disabled is a sad burden of a life. Then you need to rethink a lot of things, because my daughter’s life is a fabulous one.

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Maura – 2011 – Killiney Beach, Ireland [image description: little brown haired girl in a light pink top and darker pink skirt, wading slightly into the Irish Sea, hands up in surprise as a wave hits her ankles]

 

 

 

 

 

 

 

 

 

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And they shall know us by how we treat our most vulnerable

6 Dec

Texas, sadly, at the rate you’re going, you’re headed into the toilet.

In case you’re not a special needs parent in the state of Texas, or know one, you may not have caught up to the news. It’s okay, there’s been a LOT of news lately. Let me catch you up on what’s going on in Texas.

The legislature in Texas has decided to trim a budget. Well, more importantly, the budget for Medicaid reimbursements for therapies for kids with special needs. And it starts next month.

“But schools provide therapies!” you may cry out.

Well, apparently Texas is also capping the percentage of kids who qualify for special ed services. To the point that the Houston Chronicle has a several-part series on how the state is failing kids with disabilities and mental health issues.

I could go on about how experts state that early therapies are critical in the treatment of so many issues kids with developmental issues have – speech, behaviors, fine motor skills. Things that are needed to succeed in education. But we all sort of know that, because that’s the first thing people jump on. I mean, if you’re hungry, do you think “Eh, I’ll wait another week before I eat, it’s okay.”? No. But the state of Texas apparently thinks it is okay to deny kids with developmental disabilities and mental health issues what is basically nutrition for their brains – therapies and education.

And this is something we should all be concerned about.

“Why? I don’t live in Texas.” you may say.

You may not, but if Texas is allowed to get away with this, then other states will go for it. Because nothing says “Caring for the Community” like denying services to a 4 yr old with low muscle tone who can’t talk. Yes, that’s sarcasm.

Also, keep in mind the different new appointees to the Trump Administration.

Betsy DeVos – a product of private schools, and a champion of charter schools. Donald Trump’s plan for education has been to shake up public education, to give more monies to states who promote charter schools and private schools. Betsy DeVos is actually the perfect choice for heading up the Dept. of Education with that in mind. Sure, she has never been a teacher, or a principal, nor does she hold a degree of any sort in education. But she likes charter schools and thinks they’re cool. So does Trump. What could go wrong?

Well,  DeVos’s state of Michigan, it has proven time and again in Detroit that charter schools and school of choice doesn’t work. Charter schools go unregulated. Schools of choice are only good if you can get to them. If you’re a billionaire, the transporting of your child to school is a no-brainer. If you’re a single working mom with two jobs, three kids, and no car, then it gets a bit more difficult.

“Oh, but that’s Detroit. I would love to have a school of choice or charter school option!” you reply.

Then you probably don’t have a child with special educational needs. Because, as those of us with children with special educational needs know, it’s hard to find a non-public school willing to take on your child. And if you do find one, it will cost you. It will cost you more than your yearly mortgage payments perhaps. It will be like sending your kid to college, but for 12 years instead of 4, and no Pell Grants involved. I tried to see if there was any sort of special school for a child with moderate cognitive disabilities in the greater Seattle area. There were none I could find.

“But it’s okay. Maura’s in school and doing well.” you state.

Yes, she is. We love her school, which is a public one. But that doesn’t mean I can’t be concerned for others who aren’t in as good of a space as we are – which are lots of kids and parents. It doesn’t mean that I can’t be concerned that the man up for Attorney General feels that laws like the IDEA were “designed to help disabled children were to blame for a “decline in civility and discipline” in classrooms.”

I also get to worry because in Donald Trump’s plan for education, he has said more than once about the possibility of getting rid of the Dept. of Education and hand over the running of schools to the state and locals. And we can see what Texas is already doing with that even though they’re breaking federal laws designed by the Dept. of Education to protect our vulnerable students.

I get to worry because Paul Ryan has his eye on Medicaid, and Maura may need that in a few years. And Texas is already cutting those benefits for children who need therapy as of next month.

I am allowed to worry that there is a case up in front of the Supreme Court next month to decide just how much educational benefits a student with special educational needs must be provided with.

 

Listen – I get it. Kids like mine don’t come cheaply. But things like therapy, education, early intervention – these are sound investments. Because investing in them now, while they are young and growing, means that we give them a better start at life, that those who teeter between independent or not, could become independent adults. Every new bit of independence Maura gains means a little more time she can live at home with Mom and Dad, which, in the future, will be cheaper for the state than her being moved into a nursing home environment because we are unable to care for her.

But more importantly – my daughter and those like her, should be considered worthy human beings by the governments, both state and federal. They should be seen as human beings worthy of getting the help they need just as much as their able-bodied peers – because they are just as worthy as their able-bodied peers.

The state legislators of Texas is treating children like my daughter as an unwanted burden, and for that they should feel shame. They think they can get away with it because no one is watching, that it’s such a small percentage of the population, not enough to make enough noise to be heard.

What they don’t understand is how we in the disability world feel – you take on one, you take on all of us.

And we have friends.

If you love one of us, spread this message. Let the people running Texas, let the Supreme Court, let Paul Ryan, our president-elect and his appointees know – we’re paying attention. And we will fight the good fight every step of the way.

 

Want to tell people how you feel? Oh look! Handy links!

You can contact the Texas Legislator office at http://www.capitol.state.tx.us/

Links to Texas’s House Committee on Public Education committee members can be found here

Links to Texas’s House Committee on Public Health committee members can be found here

Paul Ryan has a website with lots of ways to contact him about how you feel about Medicaid cuts

If you want to drop a note to the Supreme Court, contact info can be found here

Joe Straus – State Representative and Speaker of the Texas House – has a website and a Twitter account

Betsy DeVos has a contact page on her website if you want to chat with her, and can be found on Twitter

And Donald Trump…well…you know he likes his Twitter

 

Confession – I’m not that good with people first language

17 Nov

Yeah, I know, that makes me not a good spokesperson.

Seeing as I’m not getting paid to be a spokesperson…I can live with that.

Maura has special needs – that’s our quick and easy way to explain her issues to strangers. Strangers who don’t need the whole saga of being undiagnosed, her speech issues, her strabismus that’s also pseudo-strabismus, etc, etc, etc.

I have a special needs teen – because sometimes, I just don’t have time to type out “I have a daughter who is a teenager living with disabilities…”.

“Special needs” and “disability” IS part of Maura’s definition. There is NO shame in that. It’s just part of who she is. Just like I can embrace my role as Anxiety Mom (which totally comes with a cape, btw, which I worry about getting caught in things.)

I could say I have a daughter with disabilities – but society still sees “disabilities” as that wheelchair symbol. You know the one –

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The fact is, Maura isn’t really physically disabled. Explaining her cognitive disabilities would require a different kind of symbol, one that has yet to be discovered.

 

I also use the phrase “special needs” in regards to things like Maura (“she has some special needs”) or as a self-descriptor on the internet (“I’m a special needs mom”) because people get it. People don’t question it. And it’s the shorter, easier to say version of “She has moderate cognitive disabilities with some minor motor skill issues”.  Because that <—? That is what we have in the “label” department.

Now, pause and think about all this yourself. When you hear “disabled”, what comes to mind? The wheelchair symbol? The elderly person with a cane or scooter?  A Paralympian?

Do you see someone who doesn’t have anything physically wrong with them?

My daughter doesn’t look disabled even though she’s pretty darn disabled according to paperwork. According to my daughter, she’s pretty darn abled, and I completely agree with it.

However, I could get criticized by the disability community for using the phrase “special needs” and “special needs mom”. Apparently it’s a no-no. And in the autism community, there’s the big “people with autism” vs “suffering from autism” vs “I’m autistic, I will call myself autistic, stop correcting me in how I call myself!” (no, seriously, it happens. People get so gung-ho on people first language that they correct actual autistic people for calling themselves autistic.)

Here’s the thing – at the end of the day, the order in which you put these words don’t matter as much to me as how you treat my daughter. Do you treat her as a cognitively disabled person…or as a person? That’s the “people first” part that concerns me the most.

 

 

 

 

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