Hierarchy of disability

Fighting my internalisation of the hierarchy of disability (CrippledScholar blog).  This post puts into words something that happens, but shouldn’t.

The basic idea behind the hierarchy is the prejudicial idea that disability is equated with being a burden or public nuisance … to maintain higher status a disabled person must not be perceived as either of those things.

 

I still hesitate to publicly label myself because I know that the additional stigma of a DSM diagnosis confirms so much of the deeply held misinformation the nondisabled public has on disability.

Well worth a read!

Modelling AAC

This Youtube clip, with the rather unwieldy name of “Communication Practices: Non directive language, engineering environments with Erin” is 45 minutes long, and isn’t as scary as its name sounds.  The term “engineering environments” simply means to set up the environment you’re working in for best outcomes, in this case, modelling AAC.  There are some great practical suggestions there, especially for those just starting out with AAC modelling, when it feels quite overwhelming.  I liked the idea of having a duplicate of the child’s AAC on hand for yourself to use, wherever you may be, whether that’s a laminated set of screen captures attached to a handbag strap, or an iron-on piece of cloth in the nappy bag.

Intolerant of children

While this article is about society’s attitudes towards families that enjoy travelling together, so much of what is written can also be true of families in general, and especially of families of children with autism.  I agree that there does seem to be a shrinking number of places where children are welcomed and accepted.  The author makes the valid point that while children have poor impulse control, the adults who are complaining should be able to control their emotions and resolve the situation in a mature fashion.  I love her final recommendation that if absolute silence is that important, then invest in some noise-cancelling headphones.

Mental Health and Mistreatment

I found the Field of Stones: Mental Health and Mistreatment article (Never Less than Everything blog), to be very disturbing, and rightfully so. Tricia recounts her visit to an ancient state mental health institution during her college years, where her professor insisted on his students demonstrating the highest regard for the patients who had walked these halls- and explained some history of the treatment of mentally-ill patients, in both life and death.  She recalls his discussion about how the use of restraints has gradually been eliminated over the years- and was horrified to hear recent reports about autistic children being isolated, abused and caged.  Despite the progress we have made, there are still people who want to control those who are different.  I wish I could put flowers on every one of those stones, too.

Autism “Spectrum”?

Is a “Spectrum” the best way to talk about Autism?, by Rose Eveleth (The Atlantic). I’ve read many articles by Autistic adults about how meaningless functioning labels are (and I agree with them!)- but this article addresses the issue from a different angle.  In trying to chart where an individual falls on the autism spectrum, she spoke with doctors, epidemiologists, self-advocates and anthropologists, none of whom could provide any clarity, or even support for the idea. Some postulated that in another 30 years, after further research, “autism” may end up becoming a lot of different diagnoses.  Research itself was discussed, as were the political-style fundraising for disabilities, advocacy, and “which” autism was being represented.

Julia on Sesame Street

It’s all over the news, and since one of my children is well beyond Sesame Street and the other is not interested, I largely ignored the multiple articles about Julia, Sesame Street’s new Autistic muppet.  I eventually did flick through a few articles, and there was the usual polarity within the autism community and very little in the middle of the road.  One very well-written article that I did enjoy was called “Is Julia really the only muppet with a disability?“.  Obviously from the title, the author suggested diagnoses for a few other characters- but she also talked about building empathy, compassion and inclusion, and referenced another article, which asked questions about whether knowing about a character’s disability would change the way we thought about them, and whether or not we need to draw attention to every difference among us.

Continuing on this theme, is an article by Stuart Duncan (of Autcraft fame), called “This is why no autism story or program will ever be perfect“.  It’s a great explanation about how everyone’s experience of autism is different- and that is why it is important to have multiple narratives, as that is where real autism understanding and acceptance comes from.

Recognising Invisible Disabilities

There are so many things I like about this post! It starts with a Youtube clip called “I’m Brianna Couture”, three girls all posing as 15-year old Brianna Couture, who all describe Brianna’s invisible disability- but it’s not till the end of the clip that the girls divulge which of them is the “real” Brianna Couture.

Too often, when discussing inclusion in faith communities, I have heard: “We don’t have any members (of our congregation) with disabilities, so we don’t really need to think about inclusion.” Really? There are NO members with disabilities? Watch the video again.

We don’t “do inclusion” for our members. Rather, creating an inclusive community is about being ready. When we wait until someone comes through our doors, often it is too late and the accommodations become reactive. True inclusion is proactive.

Autism survey results

Chris Bonnello, author of the Autistic Not Weird blog, wrote and advertised a survey a few weeks ago.  He received 477 responses, some of which surprised him, others were very predictable. Questions were across a range of topics, including public understanding of autism, willingness of Autistic people and/or family members to discuss autism with others, school accommodations, religion, language preferences (person with autism vs Autistic, and the use of mild/moderate/severe/high-functioning as descriptors), maths abilities, cure, vaccination, and whether autism has taken away or added to the respondent’s life.

The difficult parent

The difficult parent is a very encouraging article, outlining the reality of parenting a child with special needs, and the “above and beyond” nature of their advocacy, even when it’s uncomfortable for them.

Explanation of Low Tone

What does low tone mean?, by Starfish Therapies. Great explanation!

Muscle tone is the resting state of your muscles. When a child has low muscle tone it means that they need to put a lot more energy into getting their muscles to turn on to do what they want them to do. I often try to explain this to parents by describing that feeling when you finally get to sink into the couch or your favorite arm chair and relax and then someone calls you from the other room and you have to rev up the energy to get up. Think about having to do that every time you move because that’s what it can be like for kiddos who have low tone.

When I talk about strength being a challenge for kids with low tone I am talking about not just their ability to generate enough force to move their arm or their leg, but also their endurance and their ability to switch their muscles on and off. These components all work together to produce movement.