Tag Archives: civil rights

The Battle…

Posted on July 9, 2014 by | 101 comments

“It’s all well and good for higher functioning people who have autism to talk about how unique and precious their lives are and how important it is for everyone to accept their differences, but for families who are dealing with low functioning individuals, this is not their experience.   Those families are in an ongoing battle.”  

The above is a version of a comment I’ve read countless times over the years.

Aside from the curious conflation of the first part of the sentence discussing Autistic people’s sense of themselves, to the last part, which discusses the family’s point of view, as though the “low functioning” individual is incapable of having a point of view, there is no point arguing with anyone about their lived experience. However, do not make your experience mine.  This is NOT my experience of my child.  This is NOT my family’s experience.  This is not the experience of many, many families I know.  And do not assume this is my daughter’s experience either.  Just because this is the way you view your child or sibling or relative or the person you know, does not mean that is their experience of the world or their family member’s experience.

I do not assume that because I choose to celebrate my daughter, every family and every Autistic person will agree or feel the same.  Nothing is as simple as any one-word descriptor.  The ongoing battle I find myself in is with the inaccurate information about autism and Autistic people.  The ongoing battle is not my daughter’s neurology, it’s the misperceptions people have that they then apply to my daughter.  The ongoing battle is not about her at all, it’s about functioning labels, what people continue to say and believe autism means, how people view disability, the stigma attached and how people fear, reject and punish what they do not understand.

That quote?  That is exactly what I am battling – the idea that because someone cannot use spoken language, they do not have an experience of the world, the misconception that if someone cannot interact with another person in a way the majority of the population can understand or recognize, it means they are less than, unworthy, and therefore excluded.  Exclusion is the battle.  Non-acceptance is the battle.  Intolerance is the battle.  Hatred is the battle.  Prejudice is the battle.  Discrimination is the battle.  Misinformation, inequality, superiority, arrogance, ignorance, and all the ways in which people then behave because they believe these things and all the things they tell themselves that lead to any of the above being acted upon, that’s the battle.

USA-in-chains-610x400

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Posted in Autism, communication, Parenting

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Discrimination

Posted on January 23, 2014 by | 35 comments

In Emma’s RPM session yesterday with B. on the topic of discrimination, Emma wrote, “Autism voices have been silent.” (Emma initially typed “silenct and then she edited that to “silent”.)   B. encouraged her to write more, asking her what she suggested.  Emma wrote, “take time to try and learn from us instead of staring at us like we are garbage.”

When she wrote the word “garbage” I felt sick to my stomach. This, from my twelve-year-old daughter.

I remember when my father would call me into his home office to scold me for my latest infraction.  I remember the shame I felt.  I still remember the tingling feeling of rebellion mixed with self-doubt when I noticed the disapproving stare of a stranger upon seeing my outfit – a crop top and pair of cut-offs that I’d smuggled into my backpack to wear to go shopping with a friend after school.   There was shame then too.  But stares like I’m garbage?  No.  I don’t know what that’s like and yet, my twelve-year-old daughter does.  Twelve years old.  Evidently she knows this feeling all too well, as there was no hesitation when she wrote that sentence yesterday.  It wasn’t like she had to stop and think about her answer.  She didn’t pause before pointing to the letter “g”.

“take time to try and learn from us instead of staring at us like we are garbage.”

B. had been talking about Martin Luther King.  She had spoken of the civil rights movement and quoted a few things Martin Luther King said.  Emma immediately wrote about autism.  No hesitation there.  I can’t really console myself with the idea that racism and discrimination are no longer an issue in the United States and therefore the prejudice Autistic people encounter will change any time soon as well.  The language has been cleaned up, people know not to use certain words, but the feelings, the feelings of bias, the violence that prejudice and oppression encourage continues.

“take time to try and learn from us instead of staring at us like we are garbage.”

Emma ~ 2010

Emma ~ 2010

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Posted in Autism, human rights, prejudice

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Prejudice & Autism

Posted on January 16, 2014 by | 18 comments

Emma and I have been discussing the civil rights movement and the events throughout American history that led up to it.  We’ve discussed the word segregation and what it means to a society when we isolate a group of people and how people come to form opinions about other people they’ve never met.

We have discussed the word prejudice  and how it is preconceived opinions based on an idea rather than factual.  We’ve talked about how those preconceived ideas almost always do harm.  We’ve discussed oppression and how many who’ve been oppressed internalize that message and how it changes how they then view themselves.

Emma has asked to read a biography of Harriet Tubman and we have been discussing the importance of Rosa Parks and her decision to not give up her seat on a crowded bus in Montgomery, Alabama.  We have not yet talked about Martin Luther King, Malcolm X or Thurgood Marshall, though Emma wrote that she has heard of the first two, and for all I know, may know of all three.

When I asked Emma to write something about Harriet Tubman, she wrote, “defender of freedom.”  This was a couple of months ago and I was shocked because the only time I’d mentioned Harriet Tubman to Emma was about three years ago.  I had read one of those beginning readers to Emma about Harriet Tubman before bedtime. And while I always hoped she might be listening, even if only a little, I wasn’t convinced she understood what I was reading.  This was during those years before I realized Emma understood everything.  It was during those years when I believed what I was being told, that my daughter was only able to understand the most basic concepts, and even those, it was often questioned just how much she understood.

Prejudice is when we form opinions about people, that are not based in fact. Prejudice makes us blind, it twists our minds into thinking we understand or know, even when we do not.  It can make us deny facts, or decide that what is true, is not real.

As Emma never indicated that she was listening, much less taking everything in, I often wondered.  But a couple of people had encouraged me to “act as if” and so I did my best.  I remember when I read the biography of Helen Keller and later she asked me to read it to her again.  Still, despite the now obvious evidence, I doubted and even when I wasn’t actively doubting, I wondered.  Often.  It was as though I could not make the mental leap to believe what increasingly seems obvious in retrospect.  Prejudice is like that, it fools us into believing we understand things about a group of people that we do not.

As James H. Cone writes in his book Black Theology & Black Power – “How should I respond to a world which defines me as a nonperson?”  And later in the same book, he writes, “A man is free when he can determine the style of his existence in an absurd world; a man is free when he sees himself for what he is and not as others define him.”

Emma in Colorado - 2010

Emma in Colorado – 2010

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Posted in Autism, Parenting, prejudice

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“Autistic People Should…”

Posted on February 23, 2013 by | 10 comments

Today is “Autistic People Should…” flash blog day!  Please take the time to read these terrific posts by Autistic people who are blogging in to change the current views by non-autistic people of what Autistic people should or should not do or be.  Autistic people are taking these three words today and making them their own.

The Autistic People Should… Flash Blog

To give all of you an idea of what comes up if one types “Autistic people should” into a google search box at the moment ~

Yeah.

This has to change.  WE can change this, all of us, together, by spreading the word, sharing the flash blog link, tweeting the posts.  Let’s help change the way we think about autism and Autistic people.  We ALL benefit when we work toward ending oppression and respecting every person’s right to exist.

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Posted in Autism, Blogs By Autistics, neurodiversity

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The UN and Henry’s Struggle To Be Heard

Posted on September 14, 2012 by | 8 comments

Another short post today as I have a meeting in another two hours.

As I wrote yesterday I went to a meeting at the UN – The Fifth Conference of State Parties to the Convention on the Rights of People With Disabilities moderated by Juan Carlos Brandt, Chief, Advocacy and Special Events, Department of Public Information, United Nations.  The specific event I was invited to attend entitled:  “Urgency and Hope, Report from Global Leaders in Autism Research, Education, Treatment and Policy” Joshua Weinstein, CEO and Founder of the organization, icare4autism, presented with Stephen Shore, Beth Diviney and Eric Hollander presenting as well.  ICare4Autism is the organization that invited me to attend their conference in Jerusalem this past August, which I wrote about.

Juan Carlos Brandt and Joshua Weinstein 

I asked an Autism group I’m a part of whether anyone had messages for me to take to the event and a number of people wrote things such as A. who asked that I say something about “using a functioning level (usually an assumed one) to silence someone is never ok” and S. who wrote “Disability Rights are Human rights.  More specifically Autistic Rights are Human Rights.  We deserve to be treated as equals.”  Several asked that I stress the need for all to presume competence and P. asked that I be sure to say, “don’t assume I have nothing to say, just because I do not speak.”  But the first person who reached out to me was Henry who sent me this:

He wrote:  “Could you please tell them I would like to be included and learn with friends my age and where I live? I wrote this.”I am a self advocate. I want the same rights as everyone. 

Today I read about Martin Luther King.
The worksheet said because of Dr King’s work, the Civil Rights Act of 1964 gave equal rights to all people.
I am a person.
I want these rights.

I want to go to school in my neighborhood.

Why can’t I?”

Joshua Weinstein and Juan Carlos agreed to allow me to show Henry’s video, but when they tried to run it, they weren’t able to as evidently the internet was down in the entire building.  (It’s the UN!  And we think we have technical problems!!)  So as they were trying to get the video up and running I read some of the quotes from others.    I’m sorry Henry! But I’m going to keep trying.  I know many others are too.  To everyone reading this, please watch Henry’s video and “like”, comment and share.  This is one person’s struggle, but it represents the struggle of so many.

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Posted in Autism, disability, icare4autism

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“You Have To See The Horror, But Not Be Defeated By It.”

Posted on May 22, 2012 by | 12 comments

Yesterday I had lunch with the inspirational and brilliant James Cone, also known as the “father” of black theology, and a professor at Union Theological Seminary. For those of you who aren’t familiar with James and his work, he is the man who wrote the powerful book, The Cross and the Lynching Tree.  Sometimes in life you meet people, people who are special, for whatever reason, they reach us in ways that most people do not.  James is one of those people in my life.

Over lunch, as we got on the topic of various movements:  the civil rights movement, the disabilities movement, the LGBT (Lesbian, Gay, Bisexual, Transgender) movement, he said, “You cannot let your circumstances define you, who you are, your race, your gender or what others say about you.”  And I thought about Emma and how autism is perceived by many as a tragedy.  I thought about how I don’t ever want her to define herself by the way some may see her.  I thought about how that perception does damage to so many, how the way we perceive people is how we justify our treatment of them, how we treat them differently without even realizing it.  I thought about how I want to protect Emma from that.

I thought about the neurodiversity movement and how so many Autists are speaking out, asking for acceptance, asking for respect, asking to just be heard.  I thought about all those Autists who cannot speak, who are non-verbal and cannot communicate their thoughts, ideas and opinions at all.  I thought of those who are called “severely Autistic” and I thought of those who are, at this moment, in institutions or group homes run by people who may not understand them.  People who will use their ideas and perceptions of who they think they are to treat them in ways that will hurt them.  Who fights for them?  Who ensures their rights are respected and considered?   As I thought about all of this, I felt myself falling into despair.  And then James reached over and took my hand.  He said, “You have to see the horror, but not be defeated by it.”

I thought about all the stories I’ve read of Autistics who have been abused, often by their own family members, caregivers, or in homes where they were placed.  The people who cannot fight back because they do not have words.  The people who cannot fight back because even by communicating through other devices they are viewed as less than and so their words are disregarded.  I thought of those who have risen up and despite their challenges are blogging about their experiences.  I thought of the unimaginable horrors they have endured.  “You have to see the horror, but not be defeated by it.”

Those people have lived the horror, the rest of us are only witnesses to and only if we choose to be.  And that is a critical and striking difference.  We have a choice.  We can turn away if we choose.  We do not have to read their stories.  We do not have their memories etched into our brains, their experiences scarring our bodies.  We will not get triggered by those who behave in similar ways to the perpetrators of their abuse.  “You have to see the horror, but not be defeated by it.”

One blog I read not long ago, described in graphic, terrifying detail the abuse she was subjected to at the hands of her stepfather, mother, siblings and cousins.  As I read her post, I thought, this isn’t abuse, this is torture.   I felt nauseous reading her blog.   When I wanted to click the little red button on the top left corner of the page to delete it forever, I had to remind myself that this is her life, the least I could do was read what she’d written.  How do you take what you’ve read and continue living your life as you had been, before you knew what you now know?

“You have to see the horror, but not be defeated by it.”

And I know.  I know I have to keep writing about all of this.  I have to keep reading the stories, they aren’t going to disappear just because I’ve made the choice not to read them.

“Strive toward an ideal,” James said at one point.  He paused and then he said, “Write where the hurt is most.”

And so I will.  I will try.  It’s the least I can do.

Emma in one of her “pretty summer dresses.”

Read My Fear Toolkit published in the Huffington Post

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Posted in Autism, Autism Acceptance, neurodiversity, Parenting

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