Tag Archives: ableism

The Horrifying Events that Changed A Young Man’s Life

There’s a young man, his name is Reginald.  Everyone calls him Neli.  He was on the high school wrestling team, wore a key on a chain around his neck, liked to hold three playing cards, loved his hoodie, repeated “television and movie lines ” and carried a “string that he runs through his fingers.” He was described as being shy and he liked going to his local library, which was two miles from his home.  But one day none of that mattered.  One day someone saw Neli sitting on the grass outside the library waiting for it to open.  They called the police, reporting a “suspicious male, wearing a hoodie, possibly in possession of a gun.

Neli is black.

Neli is also Autistic.

All the schools within a few miles of the library “went on lockdown.”  SWAT teams were called in.  That’s at least five schools, though one report said it was eight.  Five schools.  Eight schools.  Lock down.  SWAT team.  All because an anonymous source said they saw someone suspicious sitting outside a library.

Suspicious could mean any number of things.  Maybe it means someone who moves differently, keeps their head down, stares at their feet, doesn’t look you in the eye when you speak to them or doesn’t answer you at all when you ask them a question.  Maybe they rock back and forth as they stand or sit, maybe it means they run a piece of string through their fingers or maybe they twirl it around and around the way my daughter does.

Neli was found, frisked and was unarmed.  This is where the story should have ended.  It is at this point that the situation should have been diffused.  This is where the person who had the ability to calm things down could have, but chose not to.  Maybe a parent, teacher, someone in the community who knew him, who could have vouched for him might have stepped in.  Except the school resource officer who approached Neli and frisked him, did know him or at least had seen him at his high school.  Whatever he knew or didn’t know wasn’t helpful as Neli’s life was about to get much, much worse.  Neli was forced down over the hood of a car and told he was being taken in.

According to one report Neli cried, “I didn’t do anything wrong!” The arresting officer replied, “You don’t have to – Welcome to Stafford County.”  Then he held a gun to Neli’s head and said, “I will blow your head off, nigger.” Neli fought back and in doing so the officer was hurt.

The jury deliberated for three days, found Neli guilty of “assaulting a police officer among other charges” and recommended a sentence of ten and a half years.

Ten and a half years.

The judge disagreed and sentenced Reginald Latson to two years in prison with time served.  Except Reginald had done nothing wrong.  Except that ONE YEAR in prison for seeming “suspicious” to someone is not justice.

“Suspicious” could mean someone who utters lines from a favorite movie or says something that is considered out of context or not relevant to the conversation.  Or maybe suspicious means “not white” and when combined with any of these other things this results in people imagining there’s a weapon as well.  Or maybe not being white is all it takes.  But one thing is certain, being viewed “suspicious” and black and Autistic in today’s world can get you locked up, sentenced by a jury of your peers to ten and a half years, put in solitary confinement for most of your time in prison, and when you’re broken, when you give up the will to live and try to kill yourself, it’s enough reason to put you in a straight jacket, restrain you for hours, hours in a chair, and then slap you with another charge to make sure you never get out of prison.

The Bazelon Center wrote before sentencing last week:

 This counterproductive and inhumane cycle continues with charges Latson is scheduled to face this week stemming from an altercation with a prison guard that occurred when he was being moved to a crisis cell while in psychiatric crisis and suicidal.  There was no serious injury to anyone in this incident other than Latson, who was shot with a Taser and bound for hours in a restraint chair.  Nonetheless, a new felony prosecution was initiated.

As I write this Neli has been sentenced to another six months in prison.  This is beyond unacceptable.  Neli should never have been charged to begin with.  None of this should have happened.  But it did.

A massive number of people have been working hard to gain Neli’s release.  At this moment it could not be easier to do something that could help.  If you only have a moment, sign this petition that my friend Kerima Cevik of the blog Intersected started.

Please.  It literally takes less than 60 seconds to add your signature to this petition.

Grant a pardon to Reginald Cornelius “Neli” Latson

If you have more time, please contact the Governor’s office directly Phone: 804-786-2211; via email by clicking here or on Twitter @GovernorVA and add your voice to thousands of others.

Neli Latson before his arrest

Neli Latson before his arrest

Disability and Society’s Role

I have to preface this post by saying I’m still grappling with all of this.  I recognize that while I can intellectually understand something, it takes me much longer to completely “get it” to the degree that I can own it and incorporate it into my thinking.   Perhaps this is a specific quirk to my neurology…  Here goes – Yesterday afternoon something came up that I didn’t understand.  It was surrounding the words “disability”, “impairment” and the role society plays.  It was stated that autism is a neurological difference that can create certain impairments.  Impairments that can lead to disability when not accommodated.  I didn’t understand the concept at all.  I couldn’t wrap my mind around society’s role in creating disability by not accommodating.  I need to backtrack here for a second. Stay with me…

My father was in a wheelchair the last decade of his life due to a horseback riding accident that occurred when he was 40 years old.  Most of us, who do not require a wheelchair, probably don’t think about what can happen to the human body as a result of not being able to stand and walk around.  There are things that often occur as a direct result of being in a wheelchair for the majority of one’s waking day.  Things like sores, atrophied muscles, metabolism changes due to inactivity, which can lead to constipation, a greater risk for infection, etc.

My father’s accident was my introduction to “disability” as the word my father used to describe himself.  I didn’t spend much time thinking about society’s role beyond the easy to spot prejudices people obviously had upon seeing him, how some people were worse than others, either in the way they spoke to him with barely concealed pity or the way they raised their voice or slowed their speech as though he were intellectually impaired as well.  I was acutely aware of the many places he could not go because they were not accessible to his wheelchair.  And I was aware of the physical pain he was often in. But I didn’t think society played a role in creating his disability, but rather it exacerbated it.

I’m going to interrupt this train of thought for a second while you watch the following short video (1:26) via Ollibean, the terrific site that “unites disability-centric news & editorial led content- connecting families, self-advocates, & professionals through social conversations.”

This article (by  Lisa Egan) is a great one, sent to me by the wonderful, incredibly, kind and extremely thoughtful, Nick Walker, who is interviewed ‘here‘ on Shrink Rap Radio.  After I watched the video and read all the links, I felt I was beginning to understand.

My father’s accident left him physically impaired, but with the necessary accommodations in place he could still get around and do many of the things he enjoyed.  His quality of life was greatly reduced because many of the things he once enjoyed, playing tennis, skiing, were no longer possible, but he could do other things, swimming, gardening, spending time outside.  (Still, I feel confusion and can tell, I’m not quite there yet.  I think I have an understanding, without completely understanding, if that makes any sense.  And I’m also getting hung up on semantics.  But I have to keep going with this.)  I understand my father was impaired, but was he disabled?  Obviously he was to the degree that society didn’t do a great job accommodating him, but what about his weakened body and the pain he was in that kept him from pursuing things he enjoyed and would have done had he not been in such physical pain, such as travel?

*Those of you who understand all of this, please feel free to jump in and correct me.  As I said, I am processing!

Autism.  When my daughter was diagnosed I didn’t think of her as disabled, in fact I remember resenting the notion that anyone might think of her as such.   I understood she was different, and, sadly, I also bought into the “disease” thinking, which I’ve written about on this blog.  As my thinking evolved I thought of her as neurologically different from the majority of people and as such would face more challenges in the world, than if she were not Autistic.  Still later, and more recently I thought that because she cannot reliably use either speech or independent typing to communicate yet, she had a disability, but that her disability had little to do with society and was very much a result of the many issues she faced, physically, emotionally and neurologically.

The idea that society could and should do more to accommodate her and those like her is something I have witnessed first hand and am fighting for.  Yet, this idea that society created her disability, either some or all of it, is a new concept.  So last night I spent many hours reading.  This post from Savannah on her blog, Cracked Mirror in Shalott is terrific with great links to four other bloggers whose work I have tremendous respect for:  That Crazy Crippled Chick – A Musing on the Word Disabled, Radical Neurodivergence Speaking – In this place, in this activity, I am not disabled, Yes, That Too – Ablism is to Blame and  Autistic Hoya – Constructing Disability.   And finally this piece from Sparrow Jones, Voices of Experience on her blog Unstrange Minds where she writes, “In contrast to impairment, Reindal writes about disability as the “barrier to being,” suggesting that the social constructs that view those with impairments as lesser beings, not worthy of inclusion or accommodation, creates an existential crisis that extends deeply into the disabled person’s core being.”

And this is why all of this matters so much.  Because we as a society are adding to impairment.  My child is Autistic.  There are things that are much harder for her to do than the majority of the population.  Her hardship is exponentially increased by society’s lack of accommodations for her and those like her.  This post about my experience at the AutCom Conference last fall is an example of simple accommodations  easily put into place.  My daughter’s life will be infinitely easier if people were better informed about autism and what that means.

Society plays a role in all aspects of her life, from the education system and how we perceive inclusion, to air travel, where she could be allowed to sit by the window to accommodate her need to look out the window to better manage her stress, just as someone in a wheelchair is given an aisle seat and not expected to sit just anywhere.  I could go on and on, but I’m interested to hear from all of you and hear your thoughts on all of this.

Emma and Henry type to each other with Pascal and Harvey’s assistance

H &E type

The Evolution of a Perception

As I wrote yesterday’s post about Emma’s progress in the past year, I realized how much my perceptions and views have changed since beginning this blog.  When Emma was first diagnosed I cycled through a series of emotions fairly quickly.  Some, like guilt, grief and anger hit me with a violence that took my breath away.  Others ebb and flow, while still others, like acceptance, came more gradually, but all of these things continue to change.  My ideas about autism, what that means to Emma and to us have changed.  I no longer believe there is a neuro-typical child named Emma hidden beneath guaze like layers of autism.  A child who, if we could just find the magic thing that would remove the autism, would emerge, intact, speaking in beautifully, articulate sentences, a child who would suddenly converse with us as though all these years had been silent practice for her grand debut.  I do not believe we can extricate Emma from her autism.

I have gone from thinking it was wrong for me to slap such a potent label on her, that it was kinder, gentler, more empathic to say – my daughter has autism – than to use, the more blunt and direct, “she is autistic,” to the question I now find myself continually asking – what would she say, if she could?   I don’t know.  Until she tells me, I cannot know.  But I won’t stop trying to find out.

In my search to understand Emma, I have found voices, and there are dozens and dozens of them out there, autists who, now in their 20’s, 30’s, 40’s and 50’s have blogs where they articulate what many cannot say with spoken language.  These are the so called “high functioning” autists who can communicate, some not verbally, but who have found ways to communicate through typing and other forms of communication.  Their opinions, their voices, often poetic, at times angry, despairing, brutally honest, always insightful, are making themselves heard through their blogs.  Finding these sites has been akin to learning there is a vast alternate universe.  There is so much I did not know, do not know, but want to learn.  Over the course of the past eight years, with the sole intention of helping my daughter, I have done almost every single thing many speak out against.  I didn’t know.  I thought I was fighting for Emma.  I thought my focus on a “cure” was a good thing, the noble thing, the thing that would release her from the bondage of autism.  It never occurred to me that my focus could be perceived as a kind of bondage in and of itself.  By the way, I am not beating myself up over this, or more accurately am trying hard not to, but am doing my best to listen and learn.

I know I’m wading into tricky territory here, with many differing opinions about “cures” and how that word is negatively perceived by those on the spectrum, and I don’t want to get into the semantics of it, only to suggest it is a dialogue that is important.  It is a dialogue I am trying to understand.  I want to understand.  One I hope I am coming to understand.

The abuse, the prejudice, the cruelty all of these austists have endured is staggering.  One of my favorite blogs, by the incredibly talented Julia Bascom, called Just Stimming is filled with such pain.  She writes so beautifully and with such honesty, I read her words and feel overwhelmingly grateful for her voice.  E. is another such voice with her blog, The Third Glance.  Then there’s Landon Bryce, who’s blog ThAutcast is peppered with youtube videos of himself talking.  Provocative,  passionate, he is always interesting and someone I would love to have a conversation with.  There is LOVE-NOS, a group blog with three authors sharing their views and thoughts, one of whom is Julia Bascom. Another group blog, Wrong Planet describes itself as – “a community designed for individuals (and parents/professionals of those) with Autism, Asperger’s Syndrome, ADHD, PDDs, and other neurological differences.”

The point is, these sites are educating me in ways I could not have imagined.

Someone named Kathryn commented on another blog:  “Here are two broad categories of parent attitudes about autism. (Others may exist, but these are common and pertinent.)

1. I want my autistic child to function the best he/she can, and will do anything I can to help him/her overcome the difficulties posed in his/her life by autism.

2. I want to have a normal child and will do anything to get rid of this autistic child’s autism, because then I’ll have a normal child again.”

I aspire to be the parent described in #1.

For more on Emma’s journey through a childhood of autism, go to:   Emma’s Hope Book

Emma during gymnastics last Sunday