Saturday, August 18, 2012

Getting the Most Out of Working with a Learning Disability

Here's a great article in the Atlantic that my fiance just sent me.

Being accepted & accommodated in the work world is a lot more complex than in the school system. For one thing, the school system is one huge network of institutions, though policies vary from one district to another, there are still more commonalities.  Parents and educational/psychological professionals can advocate for students. But as an adult, a person with a learning disability (or any other type) must learn to advocate for themselves. The work they will be doing also varies a lot more than school work, so figuring out accommodations is also trickier.

The article mentions a fear that revealing a disability will result in loss of respect, and being viewed as unintelligent. That may be the case for some, but I've found that often once I explain my disabilities and learning style, people (whether in work or other social situations) are a lot more understanding. I sometimes come off as rather slow, spacey and socially awkward and have difficulty with some simple tasks- because I need to do them more slowly, or differently.
I've also had people tell me that I am more eloquent in writing than in speech. I tend to blurt things out without thinking, whereas with writing I slow down and am more careful. In retrospect, there have been times in the past I now realize that explaining ASD would have made me more successful. I prefer to disclose after being hired- not just due to concerns over discrimination or misjudgment, but also because I don't want it to become the focus of the interview.

 Overall it's an excellent article, but there was some language I didn't like- saying "afflicted with" or "suffers from" is offensive to me and many others with learning disabilities. I prefer to say things like "individuals who have difficulty with", "has or is labeled with" etc. I was also both disgusted and saddened by the ignorant comments people made at the bottom- about how LDs are just excuses and so forth. I encourage my readers to go to the site and make more positive comments. The posters may not listen but it will help others who come across the article to better understand. Please mention your connection to whichever label.

Thursday, August 16, 2012

Autism Speaks + Walmart= Double Trouble

Well, I'm a little late in finding out about this, but it seems the Autism Speaks has teamed up with Walmart to sell autism-themed school supplies- 6% of proceeds go to Autism Speaks. Autism Speaks is probably the biggest autism organization in the U.S.- certainly they have the most money and publicity, and they get a lot of it from sensational media messages about the "Autism Epidemic" and panics over environmental causes of autism. There is a petition here asking Walmart to take these products off its shelves. I'm sure Walmart, like most people is unaware of the autism self-advocacy movement, and they just want to engage in a little social do-gooding.  Walmart has plenty of other questionable policies, but I think this one is still well meant. Still, it would behoove us to introduce to them the whole concept of self-advocacy and positive autistic identity.

I do have to make a side comment- the above post mentions that treatments for autism are not OK- but there is a difference between treating the negative traits of autism versus treating autism as a whole like a disease.
I understand we all want to emphasize the positive parts of Asperger's/autism but we also need to find ways of dealing with the negative aspects- sensory & emotional issues, social skills etc.

On this post on Disability and Me- Zach Lassiter asserts that they are using the money to support research for prenatal testing for autism to abort future autistic embryos/fetuses. Is that actually a stated goal on their website? It's a large website- I would need to poke around to see if this is actually the case. So let's be careful before we go making that accusation. I would also think many of their supporters, especially parents, would be disturbed by this.  As much as they regret that their children have autism, I bet most of them love their sons & daughters, and don't regret them being born. This country is also divided about 50/50 on the question of abortion, and I would guess these parents would be

I was also thinking about the puzzle piece symbol that many organizations in addition to Autism Speaks use. I remember seeing something about ASD self-advocates finding this offensive- the idea that autism is a puzzle. If the implication is that autism is a problem that needs to be solved then, yes that's offensive to me. But I see it more as that the autism spectrum is a fascinating cluster of conditions and characteristics that we are only just beginning to learn about.

I like to joke that it's because autistic people are often good at puzzles. I'm sorry, but every person I've met who really likes large jigsaw puzzles (1000+) seemed at least a little autistic.

Tuesday, August 14, 2012

Siblings Matter, Too

I was looking around the Twin Cities Arc website today and was noticing all the programming and other resources they had for siblings of individuals with disabilities.  All too often, brothers and sisters feel overlooked by their parents or others, stigmatized by their association with disability and isolated from others such siblings (as are people with disabilities)

Though I had heard of  "Sibshops" offered by the Autism Society, I hadn't realized that they have been going on for 30 years- my entire life!
It's strange, I used to not see myself as a sister of a brother with special needs- since they were similar to my own. I remember my dad exclaiming "Mariah, he's autistic!" when I grew impatient with my brother. Autistic people all have different  traits & issues we face, so sometimes when another autistic/Aspie's behavior differs from one's own it can be hard to understand.  My brother has some challenges that I do not, so does Dan's (my fiance's) younger brother. For example, I've had more problems with anxiety, and he has more trouble with taking the initiative (executive function).  Dan learned to read at 3 or so and was very verbal, but his brother had more difficulty learning to talk and read.
Plus little brothers are just annoying in general!

I have another friend who is on the spectrum, and also has Tourette's. She has struggled a lot getting through school and making her way into adulthood, but has a college degree, and has held a job and been married for years. Her older brother has the same labels but has never been able to do any of these things for long periods of time. His emotional problems are a lot more extreme.
Because of these factors I think Sibshops could certainly be of benefit to siblings that have disabilities themselves, particularly if they have milder conditions.

Thursday, August 9, 2012

Book Review: Beyond Ramps

In Beyond Ramps, Marta Russell gives an excellent critique of disability policy & cultural attitudes in the American political & economic system. She shows how inadequate the Americans with Disabilities Act is in broadening opportunities and inclusion of people with disabilities in mainstream society. There is not enough of a push for businesses to hire people with disabilities, and there was too much compromise on not putting an "undue burden" on businesses to make their buildings accessible.

Russell also covers issues of bio-ethics, the history and current practices of eugenics & euthanasia. She gives some terrible examples of people who were put to death against their will, by people who thought they knew best. Though I do have to disagree with her on the Terry Schiavo case- doctors were almost all agreed that she was beyond help, not conscious at all, and really just artificially being kept alive. Really, it's a big example of why we all need to write living wills. There is a lot more awareness & encouragement of writing living wills by health care professionals now.

Russell also challenges us- what is the "perfect baby" anyway? Where do we draw the line as far as parents choosing what traits their unborn children have? Are we loosing important parts of the human condition or playing God by aborting these embryos or screening out "bad" genes?

How much is the pro-choice movement quietly supporting selective abortion as a parent's choice? (Though she does overall support a women's right to choose) Lots of disturbing things to consider, both on an individual and societal level.

Keep in mind, however that this book is now 14 years old- Clinton was president at the time, and so the statistics and policies are now quite different. I don't have all the information as to *how* they differ, but one thing I can say is that the tides have turned a lot regarding nursing homes vs. Personal Care Attendants. During the 2000's it became realized that PCAs were cheaper, and better for the people involved, and so there has been a strong shift in that direction, though funding for them is often not enough.
I also thought she was too harshly critical of nonprofits. I think non-profits and charities can be a good *supplement* to government aid, but they definitely cannot replace them, and I agree we can't just depend on people to donate to them.

I learned a lot from this book, and it often challenged my views, and deepened my understanding of disability rights issues. I hope it will for you too!