Tuesday, November 18, 2014

Stuck In Neutral

Today, I saw a post recommending a book called Stuck in Neutral by Terry Trueman. So, I did some checking.  It's a pretty universally well-received book.  About a 14-year-old main character with Cerebral Palsy, who's convinced that his dad wants to kill him, to spare him from the "hardship" of his life.

The author himself has a son with CP.  And he wrote a book about a son who is afraid he wants to kill him.  

This is a book meant for children, ten years old and up.  Which, via the description, addresses complex issues of "euthanasia" (which is not euthanasia when it involves a child, because a child cannot legally consent.)  This is a book about a child, afraid that he will be killed by his own father.  Written by a father of a child with similarly severe CP.

I have never read this book, but just the idea of it chilled me.  I hate knowing that it's being read as part of English classes, and being taught to children.  These children come away thinking they know what it's like to have CP because of a book like this - a book not written by a person with it, but by the father of someone with it.

I don't even know what more to say.  I just needed to vent.

Thursday, November 13, 2014

Where to Find Disabled Dolls (and other toys for disabled kids)

I was just reading a post online about how much someone wanted a disabled doll when they were growing up.  I can relate to that sentiment, and I often had to get creative with my dolls, as a child, to replicate disabilities.

The Pattycake Doll Company has a small collection of multicultural dolls and toys for kids with disabilities, including:

- dolls with Down Syndrome
- adaptive equipment for dolls (wheelchairs, a walker, crutches and a guide dog)
- other toys for kids with disabilities
- dolls that fit in toy wheelchairs and walkers
- animated and musical toys
- anatomically correct toys (to teach good and bad touch)
- learn to dress and activity dolls
- Sesame Street and familiar character dolls

There's also a great Roundup of Dolls with Disabilities at Thingamababy.com, which includes some of the above multicultural dolls and includes:

- dolls with prostheses
- dolls undergoing chemotherapy
- dolls going to physical therapy
- dolls with hearing aids
- dolls with a cane and seeing eye dog
- dolls with braces and Canadian crutches
- dolls with wheelchairs
- dolls with walkers
- dolls with protective helmets
- more dolls with Down Syndrome

American Girl Dolls also embrace disability and difference with wheelchairs and hearing aids (and more.)

Wednesday, November 12, 2014

I Will Never Understand

I will never understand how blog posts like When a Cashier Reminded Me My Son Has Down Syndrome garner such a universally positive response.  All I see when I read the cashier's ableist remark is the mother's horrifying reply (which I will not post here because it's too awful) in front of her 2-year-old child no less.  And then?  The ableism of this cashier and people like her is excused by the mother who says "It's not their fault.  They just don't know."

We cannot think it's okay to speak the way this mother did, in front of her child or not, in jest or not.  Because disabled children are being killed by their parents.  In 2014.  Just within the last month, I have learned about five recently murdered children (Olivia, Ben and Max ClarenceNancy Fitzmaurice and earlier this month London McCabe.)

Why is this mother being praised for making such a horrifying remark?  For "using her wit" as she claims to have done?  Why are so many oblivious to the harm posts like these are causing?

Saturday, November 8, 2014

Question: Language to Use in Reference to Physical and Cognitive Disabilities

This is a layered question because there are so many types of disabilities.  (And so many personal preferences from disabled people.)  However, I can help with the language I am fairly sure of, and share my own opinion as a disabled person myself.

Words to Use:
- disabled
- physically disabled
- intellectually disabled
- autistic (not "person with autism" or "has autism")
- little people/little person

When in doubt, you can generally use "has _____" and insert the specific name of the disability you are referring to.

Feel free to ask me any specific questions you have (in the interest of not saying problematic things.)

Thursday, November 6, 2014

Dr. Drew on Call: London McCabe

"A desperation that this mom had in terms of the overwhelming responsibility of caring for two disabled people in her family." - Dr. Judy Ho, psychologist

"I think this was, actually, a kind, devoted mother who was trying her best to deal with these mounting stressors between her husband and her son.  She was reaching out." - Erica America, psychotherapist.

"The stress of what she was going through could have made her so desperate to get rid of something she could no longer take care of...and that's her son." - Dr. Judy Ho, psychologist

I only managed to catch the last four minutes of the segment of Dr. Drew on Call.  I did not know it was possible to feel so offended in so short a time.  Long story short?  From what I could gather, the segment centered around the mother (who killed her autistic son by throwing him off a bridge Monday) and how we should all feel sympathy for her.  I didn't hear London's name mentioned in the final minutes of the program.  In fact, there was very little reference to him at all.

Except in extremely dehumanizing and damaging ways.  He was identified as "an overwhelming responsibility," "a stressor" and, most disturbing "something she could no longer take care of."  London McCabe, was a six year old little boy, a kindergartener,  London McCabe was a human being.

He was not an object to get rid of.  London was a human being.  His mother was not the victim here.  Whatever her problems, she was the adult.  London was a child.  And I beg to differ with the sentiment expressed on the segment that this mother was "doing her best."  A mother's best does not include killing her own child.

Dr. Drew urged the audience that one of the takeaways from this situation should be that "stigma [around mental illness] kills" but I would challenge him on that as well.  Based on everything the panel had to say, and how the mother sought help for herself, the issue was not stigma.

Stigma does not kill.  Ableism kills.

Tuesday, November 4, 2014

Advice: Response to Child's Question About Sibling's Disability

Use age appropriate and positive language.  I would stick to something simple, as you have been.  "Everyone is different," but stress also that being disabled is not wrong or bad.  It just means her baby brother will do some things in a different way.  Then talk about all the ways she and her brother are the same. Show her positive examples of disability from TV shows.  Daniel Tiger's Neighborhood has a great episode, appropriate for her age:

There's also this lovely song by a little girl on Sesame Street, where she sings about her wheelchair:

Basically, it's super important that she understand that there are lots of kids and babies out there who have all kinds of disabilities, and that is totally okay.  That kids and babies have lots of things to help them like wheelchairs and braces and crutches, and glasses so they can play and be happy just like she can.  Hope this helps!

Another Precious Life Taken: London McCabe

Six-year-old London McCabe, who was Autistic, was thrown off a bridge in Oregon by his mother.

Such terrible news.  I grieve for this child and so many other disabled kids who have been killed by their own parents or caregivers.

Heard Whilst Disabled

#heardwhilstdisabled is another discussion going on (primarily on Twitter) where disabled people are going public with the kinds of comments we hear too often.  Thought I'd add some of the things I have heard.  Check out the Twitter hashtag for more.

- "It's a shame she's in a wheelchair!  She's so pretty!" (said to my sister about me)

- "You're so brave!"  (when I'm seen in a public place)

- "You're doing great!" (walking in my own apartment building)

- "You know you won't be able to earn ribbons on Track and Field Day like all the other kids, don't you?  But you can earn red, yellow, or blue stickers!"

- "You're an ishy retard!"

- "God is going to heal you!"

- "Don't you want to be healed?"

- "God has already healed you.  Your lack of faith is the reason it has not come to pass." (after having my crutches taken and walking back and forth with a pastor who kept trying to let go of my hands.)

- "I'm so glad you'll be able to walk, just like everyone else!" (written in a Get Well card in 5th grade after I had surgery for my CP.  It didn't make me walk like everyone else.)

- "Can you walk at all?  Not even if I hold your hands?"

- "I just love watching you!  You're so inspirational!"

- "Can I pray for your legs?"

- "I refuse to stand with you under the lies you're believing." (because PTSD is apparently a lie.)

- "Yeah, you run, cripple!"

- "Why can't you just push it across the floor?" (when I asked for help carrying my plate to the table.

- "It's funny!" (to intentionally trigger my startle reflex)

- "Well, we're in a rush tonight, so we're just going to run out quickly with the other kids to do Christmas shopping."

- "There!  Just the top part of you!  No crutches or anything!  It's better that way, isn't it?" (being videotaped as a child)

- "She's so cute!"

- "Make way for the princess!"

- "As the disabled person, you have the ability and decision to decide how to approach situations. Angry or able to put things into perspective. Able to decide when someone is being invasive as opposed to curious. Approach this type of recurring situation with some intelligence and dignity rather than coming across like some sort of angry disabled person." (about able-bodied people feeling entitled to ask invasive questions of disabled people.)

- "She goes so slow!"

- "You have more of a right than anyone else to be here."

- "We don't have a place for you here.  The only place available is under the bleachers."

- "If you just try, maybe you can walk!"

- "Half the kids on this team.  Half the kids on this team.  ...You can be the scorekeeper."

- "I was going to call you to come and hang out this weekend, but we were jumping on the trampoline and I didn't want you to feel left out."

- "I feel so bad for you."

- "She has a DISEASE!"

- "Hurry up.  I hate having to wait for you."

- "We don't have room for your wheelchair."

- "You have to work twice as hard as everyone else to get a job."

- "You should take your wheelchair when you go in for an application.  It makes you look more competent than when you walk with your crutches."

- "Hey, Wheels!  How are you?"

- "Are you in a race?  Did I miss the Indianapolis 500?"

- "She can TALK?"