Archive for the ‘advocate’ Category


I can’t tell you how much I appreciated this post from Asperger’s: Through My Eyes. It offered insights I hadn’t realized before.

Aspergers and Lack Of Awareness of Body Signals | Aspergers: Through My Eyes.

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I think it’s important to share the opinions of Actually Autistic people. I’m non-autistic, so even though I’m a parent of an autistic daughter, my opinion doesn’t mean quite as much as that of Actually Autistic people. Before I share my thoughts, this is a great blog entry, shared with permission, from Thoughts from an Autistic Vegan: What’s wrong with Autism Speaks from an Autistic point of view. I’d like to thank Autistic Vegan again for letting me share this.

Saturday, July 11, 2015

What’s wrong with Autism Speaks from an Autistic point of view

It seems everyone is aware of autism these days. I can’t think of anyone I have met, who has never heard of autism.  Autism Speaks has made sure that we are all aware.  Their latest awareness piece came in the form of an article in People magazine, proclaiming Bob and Suzanne Wright to be heroes, battling the autism epidemic.  Battling. Epidemic. The hate speech never ends with Autism Speaks.  It is as if they are unaware that Autistic people don’t want you to go to war with our brains.  My family became aware of our own autism, right at the same time that Autism Speaks was getting off the ground, and becoming a widely known entity.  So they made sure that we knew that autism was something to be afraid of.  My Autistic son was 5 years old in 2009, when Autism Speaks stated, “I am autism…. I work faster than pediatric aids, cancer, and diabetes combined.  And if you’re happily married, I will make sure that your marriage fails.”  http://autisticadvocacy.org/2009/09/horrific-autism-speaks-i-am-autism-ad-transcript/ Where are the help and the resources? OT services could be provided for families to get help with understanding their children’s sensory needs.  Communication devices to help people communicate more effectively with their families would certainly help many of us. No, fear is all Autism Speaks has to offer.   Autism Speaks raises millions of dollars with their pity campaigns, and yet, only gives 4% back to families in the communities. http://loveexplosions.net/2014/10/31/oops-they-did-it-again-autism-speaks-2013-financials-just-released/

My son was only 2 years old when Autism Speaks made a documentary called Autism Every Day.  This movie is a pity party for parents of Autistic children, the worst part being when a mom talks about wanting to drive her Autistic child off a bridge, while her Autistic daughter is in the room, and says she only did not do that because of her other, non-Autistic child. http://tinyurl.com/nnhveky These are the things that do the most damage.  Autistic children are murdered by their parents at an alarming rate.  Yet, in the media, which Autism Speaks is always at the center of, this is excused.  People lament the lack of services, think of the martyr parents, and shake their heads at the unfortunate lot in life to have an Autistic child. http://www.autistichoya.com/2013/03/honoring-dead.html In their most recent documentary, Sounding the Alarm, there is more of the same.  Over and over again, the message from Autism Speaks is that autism is an epidemic to be battled.  They don’t take the time to talk to Autistic people of any age to get their opinions on what services are needed, or what message should be sent to the world at large. Instead, they speak to weeping parents, and call for more services as they exploit Autistic people’s darkest moments for profit. They show a complete and utter disrespect for Autistic people in every action that they take.  Because of this, it is very difficult for me to tell people that I am Autistic.  I know it changes their opinion of me, because of the lies that Autism Speaks told them about people like me. No organization has done more harm to the community they claim to help.  It makes me sad that they are the leading resource doctors, therapists, businesses, and everyone else, looks to when seeking information about autism.  How can they be the leading resource when they do not even consult with Autistic people in any meaningful roles?  https://www.autismspeaks.org/about-us/board-directors It’s time for people to stop listening to Autism Speaks, and start listening to Autistic people.

 

This blog entry has several things going through my mind. First, I think I’ll let this marinate a little while for you guys to read. Then I’ll post my own thoughts. But first, please let me emphasize this for other non-autistic parents of autistic children: our children’s opinions on autistic matters including themselves are more important than our own. Who knows what’s better for someone than the people that are having policies and decisions and social discussions about them? I think this reblogged entry I just shared is one that we need to pay attention to, because it’s a common theme among adult autistic self-advocates. 

 

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I ended up wearing rainbow colors that day that I wrote about doing anything, even wearing blue. I just… I realized that supporting her meant more than wearing the blue because it’s her favorite and she asked me and she thought I’d be celebrating her. It meant so, so much more and I tried to explain why I wore a rainbow-flower skirt with a purple shirt (my own favorite color) in a way she could understand. But how do you explain that wearing blue, lighting it up blue, is a trigger event and silences Autistic Voices? That anything explaining away why it’s okay is really not okay?

And that’s what I think I did in that entry, and I wholeheartedly apologize, no qualifications.

So how did I explain to my daughter why I broke the blue promise…

Rainbows and flowers are love, and everyone loves flowers. Autism is full of wonderful colors, not just blue, and even if the flowers in my skirt were fuzzy at the edges they were far prettier than puzzle pieces all over the school walls. She nodded in agreement.

I told her that I wanted her to be able to choose from all of the colors in the rainbow when she’s making friends, when she’s thinking, when she’s getting dressed, when she’s looking outside, all just like when she’s painting or making crafts. She nodded more with each example.

I told her that an agency named Autism $peaks created the Light It Up Blue idea, and that we don’t like all of their ideas because some of their ideas include wanting to cure Autism. I asked her if she remembered hearing about that several days before, and she nodded with a Very Serious Expression on her face.

Then I explained that there are other supportive agencies that want to help her and others like her grow and be happy, and learn to be a self-advocate as she grows up and becomes a teenager and an adult.

I explained that sometimes we were going to have to have different kinds of conversations now about how some people think Autism is not a good thing and how we can change those ideas by showing them the good things and teaching them about the ideas that they don’t quite have right. That sometimes people believe things about Autism that aren’t true, but that we can help educate them. She nodded. She seemed to like the idea of being an educator instead of the student.

I explained that there would be times we would be talking about the better ideas that Mommy has read about from the good agencies so that Mommy can better understand who is a helper and who is not… and that I think she’s getting old enough to learn those things too.

She nodded her head, with a furrowed brow, and said, “Mm hmm.”

“Do you have any questions?”

“Can I still wear my blue skirt?”

“Yes. Always. You can even keep blue as your own favorite color.”

“Mm hmm. Yes.”

“Do you want to ask me more?”

“I don’t know.”

She walked away. So that was that.

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Great way of showing what I’ve been trying to say, but more succinctly. Check out this post below from Jess at Diary of a Mom.

communication | a diary of a mom.

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April 1st: Rainbow of RosesMy Sweet Girl loves blue. Of course, she also likes green, pink, and purple, but she says she loves blue the best.

Last year she started to notice that her elementary school was taking part in encouraging the students ahead of time to wear blue and “light it up blue” for April 2nd in order to show solidarity and celebrate Autism. They teach the children about Autism and why it’s important to be accepting of differences, and how autistic children and teens and adults might think differently but are still just the same as everyone else. They show the children the positives, but also teach the children that there can be difficulties, challenges, obstacles, that might be hard for them to understand if they aren’t autistic themselves, and it’s very important to know that they don’t have to be afraid. They shouldn’t bully children that show autistic behaviors, but should be friends with them and protect them. They don’t have to accept being bullied themselves by anyone, and if they see a child that they think might have disabilities such as happens with Autism, they should speak up.

Now, this isn’t what my Sweet Girl told me. She came home and told me that the whole school dresses up on April 2nd in her favorite color, blue, especially and specifically to celebrate her.  As a 6th grader she plans to wear blue tomorrow to celebrate herself.

I learned that this is what the elementary students are being taught by a neighbor’s daughter this morning because she was so excited to tell me about having learned about Autism in school to prepare for tomorrow. She’s excited to learn more, and she’s even more excited that she can share positive experiences with classmates because she’s at our house nearly every day. I remember how sad she was when she heard that there are people who would want to cure Autism and prevent people from being born with it. She immediately said, “But then there wouldn’t be awesome people like G!”

This morning my neighbor girl also told me how much she enjoys Sweet Girl and there are lots of things she loves that Sweet Girl does. Her very favorite thing is when I hold up my hand to give a high five, and Sweet Girl goes to give me a fist bump instead… but when I hold up my hand to give her a fist bump she puts up her own hand to give me a high five. She loves Sweet Girl’s sense of humor; she loves seeing how Sweet Girl can start her morning routine with the worst of moods and then change it around by helping me bake muffins or smelling coffee and giggling that giggle that Sweet Girl does.

Those are the things she wants to share. We’ve turned our little 9 year old neighbor into an advocate and ally already. ;-)  She plans to wear blue head to toe in honor of Sweet Girl.

This does present a dilemma in my own mind because these girls really don’t connect lighting themselves up blue with the damage done by Autism $peaks. How do I tell these children that they shouldn’t because it’s offensive to those of us who know what it’s connected to? That if they come across an autistic individual who would be offended knowing the significance as a self-advocate, it could cause a trigger effect for that person that could last hours or days? How do I justify taking away their excitement to learn more positive things and their desire to educate and not just make people aware but ACCEPTING?

These kids get it, you know… that it’s about accepting now and not just awareness. After all I think that there are probably only 12 people left in the developed world that have never heard of Autism. As a nation, we’re definitely aware. The problem is that as a nation, we’re not educated and we’re definitely not accepting. We can’t even accept disabilities as a whole let alone Autism. We have a self-proclaimed Autism support agency, Autism $peaks, who takes donations and doesn’t put them towards services but towards research that would try to find cures and prevention. We have parents who try to murder their disabled children, and apologists for them who “understand what they’re going through” hoping courts will be lenient and demanding others not judge them. We have comedians making vicious fun of disabled people. We have musicians writing offensive song lyrics against autistic people. We have every day people using the word autistic as a slur and an insult just as they use stupid, moron, idiot, and dumb (all ableist language).

These kids are getting it. This is why I support mainstream education rather than separating the students that have disabilities from the non-disabled students. It’s not just about educating them and telling them in a Do As I Say, Not As I Do situation. It’s about seeing each other as equals because heads up, they are, and treating them as such because guess what, they are. It’s about learning that being different doesn’t mean less, and it doesn’t mean segregation. It shows all of the children, including the children with disabilities, that we ALL have challenges and obstacles and we all need different kinds of help.

It teaches more than tolerance, more than awareness… it teaches acceptance. A quiet, natural acceptance.

A major issue with what April as Autism Awareness Month means is that for the teen and adult self-advocates that are aware and educated about the intricacies of the history of how society treats disabled individuals; that have been through traumatic experiences as they’ve grown up for various reasons at the hands of their parents, peers, education, therapies; how society specifically currently views Autism as a whole; and last but not least the intense spotlight that this “awareness month” puts on Autistic individuals is this:

It’s not the right kind of attention for many Autistics.  It’s anxiety inducing.

Donations often go to agencies that are not supportive of Autism at all, nor of Autism Services (Autism $peaks I’m looking at you).

It’s a huge burden to bear to be the face of Autism for an entire month.

It’s a huge burden to bear to be expected to educate people for an entire month.

It’s a huge burden to bear to have to argue with parents who have not accepted their child’s neuro-diversity even if their child is in their  40’s or 50’s.

It’s a huge burden to bear to be expected to “overcome” their disabilities or show them off for others.

It’s an even worse burden to have to defend being Autistic in a world that still wants to cure you and insists that it needs to prevent Autism in others. Autistics around the world feel that if their parents wished they weren’t Autistic, that if they could stamp it out, then they’re also wishing they were stamped out. There is no distinction between their person-hood and their autism.

It’s not fair when parents use this month to spotlight how much they hate Autism, causing Autistics around the world to feel that they are hated. If you hate Autism, they feel you must hate them as well. That’s a reasonable feeling. There is no distinction between their person-hood and their autism.

I can’t say that I disagree.

That’s an awful lot to bear. That’s why at only 12 years old, I’m really not sure that I want to take the joy out of my daughter’s eyes when she sees her classmates wearing blue because her interpretation is that it’s all in her personal honor. It’s Sweet Girl Day tomorrow. I know she’ll ask me to wear blue for her, just as she did last year. I sigh as I write this because I know the social implications, but for my daughter? I’ll do anything. Maybe I’ll wear a multi-colored something.

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Happy April! What a gorgeous day today is. All of my girls are feeling well; it’s sunny and temperatures are supposed to reach 40*F; I’m finishing my first cup of coffee while wearing one of my favorite sweaters before getting ready for work.

I think it’s time to assess the things I’m grateful for, especially with Easter coming up this weekend.

Today, on April 1st 2015, I’m very grateful for:

  1. coffee
  2. very large coffee mugs
  3. like, coffee mugs that will fit three 12-oz servings of coffee to drink all at once and that’s like… oh sheesh, math… 36 oz in one mug!
  4. the fact that my family understands the importance of coffee in my life
  5. my husband
  6. my children
  7. seeing so much good in my daughters, with love reflected back to me and in everything they do
  8. my brothers
  9. all of my sisters-in-law
  10. all of my brothers-in-law
  11. my parents and my mother-in-law
  12. my very best friends, my chosen sisters
  13. the good health of my family and friends
  14. my job
  15. the fact that most days I can still function enough to go to work
  16. working toilets
  17. working heat
  18. blankets
  19. sweaters
  20. fluffy slippers
  21. my Kindle
  22. kitchen gadgets
  23. the fact that it hasn’t snowed in two whole days
  24. God answering my prayers in small ways that matter
  25. a working phone
  26. working clothes washer and dryer
  27. payday
  28. my invisible internet friends
  29. oh my gosh, my CATS of course
  30. and how did I not put chocolate on this list by now?
  31. and Girl Scout cookies?
  32. God, there’s something wrong with me today. I also forgot hot showers
  33. and paper towels
  34. and freshly washed warm bath towels
  35. being able to bake with my daughters
  36. family being appreciate (usually) of my cooking)
  37. a (kind of) working (kind of) reliable car
  38. getting X-Finity over frontier because frontier sucks donkey balls, let’s face it
  39. DVR
  40. oh my gosh, why isn’t my hairdresser further up this list? clearly great haircuts from my awesome stylist ought to be further up this list. Last but not least, saved the best for last, and all that, right?

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This came to my attention on Frday of last week, and I’ve been trying to write something that isn’t using profanities every other word. I’ve had about 60 drafts. [There is a new edit at the bottom of the post]

There’s a YouTube video called Autism Mom FURIOUS is over Steve Harvey’s comments – 3.26.15 – YouTube that brings attention to something despicable, something that she has every reason to be furious over. Something that I’m furious and sickened over.

Steve Harvey used his radio show as a comedy platform (as Sister Odell) to make fun of disabled adults attending Church.

I’m not being overly sensitive or too politically correct. If you were to tell me that, you’re defending his actions and diminishing the lives of disabled individuals everywhere.

I’m not infringing on anyone’s right to free speech to call out a comedian’s, or anyone else’s, behavior and speech. This may be cliche at this point, but if he has the freedom of speech to behave badly and speak in a degrading way about disabled people and laugh like a fool over his own (lack of) cleverness, then he’d better be damned sure to be ready for others to use THEIR right to free speech to call him out.

His words were like acid, caustic and issuing a damaging blow to the disability movement. It tells people in cultures where shaming and being embarrassed about their disabilities and their disabled family members that it’s appropriate and even “funny.”

It tells people that those who can’t always speak against this very same sickening attitude that the world is not even attempting to change to be more sensitive, let alone accommodating, to them.

It tells them that this hatred, being thinly veiled with so-called humor, not only exists in their own homes with family members, but likely at work with employers and co-workers, with neighbors… and out in the world in the media and with other people in the public eye that are looked up to for heaven knows why.

It tells disabled children in school that the bullies who claim they’re just joking, using humor as their mask, will be allowed to get away with it because they’re not really doing any harm. And no one will do anything until someone commits suicide; then everyone blames the child’s parents for not realizing how disturbed s/he was in his disability and why didn’t the parents get him/her the right help or realize how mentally ill they were before s/he committed suicide, when the real issue is that demeaning disabled people and making them Less Than Human is damaging.

Disabilities do not make disabled individuals Less Than Human. They… we.. are fully Human. We’re simply different. And in the words of Temple Grandin, disability (although originally from the point of view of Autism) merely means Different, Not Less.

It’s not unrealistic to expect that some things should be completely off limits as jokes. It’s more than “in poor taste.” We can take poor taste. What Steve Harvey did is cruel, bullying, and calling it comedy somehow gives it free license to say truly hurtful things and it shows exactly how he feels when he sees someone with Autism or similar disabilities that have nonverbal learning disorders and additional conditions.

Calling it comedy means that some people will repeat the so-called jokes because it’s “funny” and of course funny means that people won’t be able to conceive of the idea that it could be hurtful. They’ll repeat it because they’ll have reinforcement that attitudes such as Steve Harvey’s about disabilities and disabled individuals are acceptable and correct. You know, because we’re the ones who are humorless and touchy and overly sensitive.

Those attitudes are not acceptable. Not. Acceptable. But I suppose with Steve Harvey being who he is, I shouldn’t be surprised.

I’m disgusted and sickened. This is the sort of attitude that I feel I’m swimming upstream through chunky peanut butter to end. I’m allergic to peanuts.

No, Mr. Harvey, there’s no way you’re getting out of this with anything less than some very public reconciling to do as well as some reconciliation of the divine sort.

Share. Please. Share that link. Listen to what Steve Harvey thinks about disabled people from his talk show. Then boycott him. If you can’t do that, then write to his producers and tell them exactly what you think about his behavior. Let them know that if you were a fan, you’re not any longer. Let them know that if you hadn’t watched or listened before, there’s no chance in hell now.

More importantly: If you ever have behaved or spoken in a way that’s degrading to any individuals that have any disabilities at all, please stop. Think about the damage you’ve done and are doing if you don’t stop. You don’t know who has an invisible disability that hasn’t come out to you about it, so you don’t know who you’re harming. Be an ally instead of the villain.

#BeAnAllyNotAVillain #FlashBlogBoycottSteveHarvey #BoycottSteveHarvey

[EDIT: I really didn’t want to add what it was he said because I think if you watch that video above, she illustrates what’s wrong with what he said. But I should have included that he joke was made during his morning talk show on March 26th as his character “Sister Odell.” He has since apologized except that his apology wasn’t really an apology. It was a “y’all can’t take a joke” jab.

It started out on Facebook as,

“To everyone, please accept my sincere apologies. It was not my intent to hurt anyone.”

He should have stopped there. That would have been perfect.

He continued with:

“Sister Odell is a made up character, she is not real and my intent was not directed at any other real person. And most certainly was not directed at anyone you know. Again my apologies. The problem with comedy is ALL subjects can offend someone. Please forgive me if you were. DON’T TRIP HE AIN’T THRU WITH ME YET.”

Apology? Do you see what he did there? Exactly what I said he’d do. He excused his behavior. He blamed those offended in the disability community, for being offended that he said offensive things he should have never said. Under the claim that it wasn’t really him but the character he was playing.

When you apologize to anyone you’ve offended, you simply apologize and you don’t qualify the behavior. You don’t excuse the behavior. You don’t turn it around and blame the massive group of people you offended for being rightly offended.

This was a non-apology.

How does one exactly blame the fictitious character that one writes and plays? It’s not MY fault, it’s Sister Odell’s fault for making fun of someone that doesn’t actually exist.

No, it doesn’t work that way. It can’t.

Those “jokes” only barely thinly mask a very real opinion. He wasn’t being sarcastic in the jokes, using them to describe a behavior about disability bigots that he was disgusted with. He was the one making fun of disabled individuals. It doesn’t matter if it wasn’t directed at a specific individual… that makes it even worse because now we also know what his stereotype of a disabled person looks like. They’re all intellectually disabled, unable to speak, unable to control themselves and their bodies, unable to control the sounds coming out of their mouths, looking foolish.

This is what such “comedy” perpetuates. That a thin mask of hate of disabled people and their disabilities, and hatred their audacity to be disabled in public, can be called comedy and therefore not be considered hate speech or discrimination. No, if it’s comedy, it couldn’t possibly be a mask of hate and discrimination.

What saddens me is that there are people commenting on his pages that they are or know someone close to them (like a son or daughter) who is disabled, and not only are they not bothered but they found it funny too. They want him to continue, and they support him and believed an apology was not necessary. That anyone offended had no reason to be offended and basically, we’re all party poopers without a sense of humor.

That’s what couching hatred of disabled people in humor perpetuates. Not acceptance, not a desire to learn more, not even tolerance.]

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