disabled-kid

10

To know my journey as a Black disabled woman, you have to know my past.  

I was born with OI (Osteogenesis Imperfecta), better known as brittle bones disease.  My beloved Grandmother raised me in a loving home, & showed me what unconditional love was about.  I have part of her name, & have always been proud of that name - Vilissa.  Unbeknownst to me until I reached adulthood, Vilissa is French, & means, “to love & cherish life.”  How fitting of a name for a young disabled Black girl who was smart, caring, loving, fun, kind-hearted, sassy, loved to learn, & knew how special she was by the praise she received at home, at school, and from those she met.  

The young Vilissa would experience many successes as she went through school, which empowered her because she knew she was just as good, if not better, as anyone else.  Her excelling in every subject motivated her to do well in the subjects she loved - reading & writing.  She had no idea how powerful words would be to her as an adult, but at this time, she loved reading her Baby-Sitters Club books, & writing in countless journals, sometimes creating worlds & characters that didn’t exist, but her imagination & ability to tell a story grew profoundly.  

As I grew into my teen & adult years, I changed in ways that I didn’t imagine, but the loving, supportive foundation I had in my younger years caused me to be steadfast as I grew & navigated an able-bodied society.

This is Part 1, showing my years from 1st birthday to 12 years old.  

“I don’t want him to feel different”

I’ve encountered a lot of parents and professionals who are reluctant to talk to disabled children about their disabilities.

People often believe that children with disabilities are innocent, and that they can protect their innocence with silence. They express concerns along the lines of “I don’t want him to think something is wrong with him,” or “I don’t want her to feel different,” or “I don’t want them to feel bad about themself.”

You can’t protect disabled kids this way. They know that they are different, and they know that this difference is perceived negatively.

Some examples of how kids figure out that they are different:

  • Kids watch what other kids do.
  • Typically developing younger siblings develop skills that they still haven’t mastered and may never master. They notice. They also notice how their parents react to this.
  • Kids with disabilities often see other kids their age doing something that looks fun, try to join in, and find that they can’t keep up. They notice, and they have feelings about this.
  • They also notice when other kids think they’re weird or boring and avoid them.
  • If they go to a special education program, they notice that other kids don’t take the short bus to school (and they hear what other kids say about the short bus, or they see it in their body language.)
  • They also notice that their school is really different from schools on TV and in stories.
  • All the kids their age on TV and in stories can do things that they can’t do. They notice.
  • Disabled kids often struggle to understand something that’s clear to everyone else in the room. They notice that this happens a lot.
  • Kids with disabilities get called the r-word, or the moral equivalent. 
  • Adults expect them to do things that they can’t on a regular basis. Other kids their age can. Adults are disappointed or angry. They notice.
  • Kids notice when they have to go to therapy and other kids don’t.
  • Kids notice when doctors hold them down for painful procedures while they struggle and cry. They notice that this doesn’t happen to kids in stories and that it’s not in any of the books about being a kid.
  • They notice that they have a lot of tests and that they’re talked to in ways that other kids aren’t.
  • They are often required to follow rules that other kids don’t have to follow. They notice that, too.
  • Parents talk about how tired, scared, and overwhelmed they are by their child’s needs or navigating the systems. Kids overhear. 
  • Many kids also eventually overhear the name of their condition and google it. 
  • And any number of other things.

Your silence doesn’t protect them from any of these experiences; it just isolates them. Kids are already bearing the pain of disability and of other people’s reactions to their disability. If no one will talk to them about it, they are also very, very alone. You can’t protect their innocence; you can break the silence that isolates them.

hey, non-disabled people...

y’all really need to learn how not to take it personally when disabled people are upset about being left out. yes, do your absolute best to include us - learn to account for needs different than your own, be willing to do things at our pace, do not treat us with pity. but also learn to accept that sometimes we feel left out and it isn’t about you. 

sometimes most people you know are going to something that you can’t go to or something you can’t do. 

maybe it’s a party that will be too loud, too many people, maybe you’ve already used up your social spoons for the week. or maybe some friends are playing a game that moves too quickly for you to follow or that you don’t have the attention span for, or that you can’t understand without help. 

and sometimes there are things that others around you can do that you want to do too, but know you are not going to be able to. maybe it’s some kind of physical activity you really want to do, but your body can’t or won’t do it in the ways you want it to, or maybe it the energetic cost is just too high to make it worth it. 

and it’s not as simple as asking others to sit it out with you. when most of our needs are already treated as if they are Too Much, how do you expect anyone to ask for something that isn’t seen as necessary only to immediate survival? where are the scripts that teach us how to ask “will you please be my teammate on Team Stay-At-Home”? and how do you ask for an entire activity to be done in a totally different way so that you can do it too?

 sometimes this - this asking - is worth it. but please understand, this - this asking - is something most of us already have to do in some way or another  all day every single day. so, asking a friend to not go to that party that you know they are really excited to go to is something that becomes incredibly hard to justify to yourself; or maybe you worry that it will be the “last straw” and you will lose that friend for needing Too Much. 

sometimes, even if we do have someone who will hang out with us while others are off doing something we can’t or something that isn’t worth it to us, it doesn’t change the fact that it sucks to want to be able to do something that you know you can’t do. this is a shitty part of reality for most of us - being disabled means getting left out sometimes. that doesn’t mean that makes it okay, but there are lots of things that are real and true that are not okay. 

and, while i certainly can’t speak for anyone else, i’m willing to guess that most of us get it - we get that sometimes other people are going to want to do stuff that we cannot do or isn’t worth it for us to try and do. the point of all of this is not to try and prevent the non-disabled people around us from doing things they can and want to do. the point of this is not to make people feel guilty for sometimes wanting to do things we can’t. 

so instead of getting annoyed at us, telling us how guilty you feel, pressuring us into trying to do something we’ve already told you we cannot do, rolling your eyes at us when we say we can’t do it…please learn to stop taking it personally and stop making it about you. learn to listen to the disabled people in your life. 

when someone is upset because they want to do something that isn’t accessible to them (and taking measures to make it accessible isn’t possible or isn’t what the person wants or isn’t going to fix the issue) - learn to listen to that. 

learn to say “that really sucks” and “it sucks to feel left out,” and “it’s really shitty that there doesn’t seem to be a way to change this activity so that you can do it too.”

offer to make other plans with us for an activity we can do, an activity you know we enjoy. offer to plan a special hangout/date/friend adventure with us. let us be the ones to pick the next activity. 

ask if there’s anything we need before you go out for the night. remember that asking is hard and in addition to feeling left out, we might be feeling worried about being on our own. 

offer to hang out with us before or after something you are going to. come over before the party and make dinner with us. come home early from that big group activity and hang out with us instead of staying out late with everyone else. 

remind us that you care about us and that there are other things you like doing with us when we can’t come with you to the party. 

but whatever else you might do, please learn to understand that sometimes we get left out and that it can feel really awful. learn to respond to this with compassion instead of guilt. learn to recognize when you are pressuring us to do something because it is something *you* want to do. learn to understand that you’re probably not going to ever fully understand. learn to stop making it about you when we are the ones who are feeling left out. 

and sometimes, yes, offer to sit it out with us. but please don’t do this unless you really mean it. 

Plastic Planet needs your help!

Hi everyone, I’ve been making this really exciting web show called Plastic Planet and we really need your help!

It’s all about taboo subjects such as race, sexuality, gender and mental health and the first episode will be on ‘sexual desire’. We’ve set up a crowdfunding page to help us achieve our dreams of making an educational yet subversive show with 90′s influences and we’ve collaborated with so many amazing people.

Please click the link/watch the video and if you can donate, even just sharing will mean the world for us, but anything that you can do will be fantastic, we really want to make it for everyone and for it to be a new format to get important information across! If it’s successful we’ll be making more episodes so we really hope you like it!

Crowdfunding: https://www.indiegogo.com/projects/plastic-planet/x/13284550#/

Youtube video: https://www.youtube.com/watch?v=yikqDxHxFH0

You can also follow our team on different social media sites!

Facebook

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Vine

Thank you so much for taking your time it means so much to all of us!

For $35 I will come to your house and ineffectively push tiny amounts of snow around your driveway with my “wheelchair plow,” so that your neighbors will think you’re a kind-hearted person for hiring the disabled kid. Hit me up for details.

the power of a story

sometimes I am not sure about telling stories about growing up as a disabled kid, but then, I do and people respond by sharing their own suffering in a way that is like they’ve been holding their breath, holding on to the weight of the story this whole time, waiting for a chance to tell it. I guess that’s a natural impulse.

youtube

(via https://www.youtube.com/watch?v=3byhRLfNSmc) #KingstonProject https://youtu.be/3byhRLfNSmc Please repost! by Alyssa Papaleo Photography To Donate: www.gofundme.com/Kingstonproject

a thing for parents who try to prod their children into jobs/ more classes/ whatever extra activity you think would benefit them that they show no interest in

Consider that not everyone can do it. Consider that maybe your child can’t.

Consider that your child could be disabled.

Even if you consider yourself an ally to disabled people and understand why disability payments are necessary, that not everyone can work, and you use the train of logic ‘Yeah but my kid’s not like that…’

Consider that many disabled people do not start off thinking we’re disabled. When I was a teenager and missing classes because my depression was so bad I could barely contemplate going on living, much less getting out of bed, I did not think “Oh, I am simply mentally ill”. I thought “Damn, I am the laziest SOB in history.”

When my executive dysfunction flares up, even now when I know what it is, my first instinct is to say “Damn I’m so fucking lazy! I can’t even do this multi-stepped task that will make me happy/unstressed!” It’s not “Oh yeah, I’m autistic, that makes sense”.

Even after being diagnosed with fibromyalgia for over three fucking years, I still get worried that my wheelchair is secretly a sign of laziness.

We are so often taught that we have to live up to abled standards of how we should act, that we should be able to do everything. And when we cannot, we often feel like shit.

If you can see other disabled people and think “Yeah, they can’t do [thing[”, but can’t contemplate that maybe that is happening to your kid, you are not an ally to disabled people. Disabled people exist before we have diagnoses, before we even know we are disabled, back when we still think that there is something ‘wrong’ with us.

Don’t assume your child is abled until proven otherwise. 

Footnote: I know forcing your kid into doing whatever activities you think would enrich their behavior is bad no matter what, but right now I am thinking specifically of people who are supposedly fine with disabled people not being able to work as long as they are abstract, but who aren’t when we are right in their faces.

[ I STATE this blog posts NSFW content and the muse acts in ways that are NSFW on a regular basis. and YET– YET–!! ]

Keep reading

weneeddiversebooks.org
Perspectives of Authors With Disabilities – Part 1
Introduction by Lyn Miller-Lachmann Thank you for reading the third in the We Need Diverse Books roundtable series! This roundtable features seven authors of middle grade and young adult fiction wh…

This @weneeddiversebooks roundtable features seven authors of middle grade and young adult fiction who have disabilities. I am honored to be joined by Corinne Duyvis, Sarah Jae-Jones, Tara Kelly, Kody Keplinger, Cindy L. Rodriguez, and Francisco X. Stork, who talk about writing (and not writing) about their own disabilities, the intersectionality of disability and other diverse identities, challenging tropes and stereotypes that have become part of the canon, and how we can help authors with disabilities get their authentic stories published and read. We have a lot to say, but it’s worth the read!

gofundme.com
Click here to support Help Roz with medical bills by Beth Haller
For many years, Roz, a resident of Philadelphia, has helped others. Now she needs your help. She has been the mother to three children with disabilities, a loving partner, and works as a personal attendant to people with disabilities. Then a few months ago she had a seizure that led to an extende...

I usually do not do this because my mom is a very proud woman but but a family friend offered to help try and help raise money for her medical bills and she accepted I knew this was a serious issue.  My mom has devoted her life to helping those in need.  Both of my moms have adopted three kids with disabilities as well as myself, I am their only abled bodied child. My mother is a social worker and a care attendant who has helped those with disabilities for years.  Her and my other mother have devoted their lives to helping those in need and now she really needs the help of others. A few months ago she suffered from a seizure that resulted in her fracturing her eye socket and a long stay in the hospital.  She can’t afford the bills nor can she afford to have surgery on her eye.  With this she has had to cute her hours of work by order of her doctor to recover.  Please help my mom on her journey and to help her receive the surgery she needs.  Anything will help even a boost, thank you so much.  

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Kayla Whaley reviews I Funny by James Patterson and Chris Grabenstein on Disability in Kidlit.

Violence is shown as the purest way to tell you aren’t being pitied or given special treatment because of your disability. Over and over we see Jamie being grateful for his abuse. This is dangerous. It tells disabled kids that they should long for physical and/or verbal abuse, and that anything short of that is pity. It tells disabled and abled kids alike that abuse is the standard way to interact with others. That it’s expected. That it’s normal.

This incredibly dangerous message makes an already vulnerable population even more so, especially since it really can be difficult to tell if someone’s treating you differently because of your disability or if they’re being genuine. You start questioning every compliment, every good progress report, every letter of recommendation, every win. You wonder if you really deserved the good things. It’s hard and complicated.

But what isn’t hard or complicated is that no one deserves abuse, violence, or to have their boundaries ignored. Those aren’t markers of equality. And neither respect nor empathy are markers of “special treatment.”

[read the full review at Disability in Kidlit]

honestly im still not over how my sister was like “yeah i told my trainer ur disabled…” like what part of working out involves u tellin ur trainer abt my disabilities like why do u feel like u need to tell everyone HEY GUESS WHAT!! MY SISTER’S DISABLED!! like im not kidding she always does this. and i know she only tells ppl that to gain sympathy and make herself look better or more interesting. look at my disabled sister!!!! isnt that so interesting!!! yeah growing up with a disabled sister was hard :/ like bitch