Archive for the ‘autism’ Category


So Many Mistakes

My intention here: this is not a “poor me” or “poor mom who has an autistic teen” post. It’s about owning up to past behavior that I think seeps into the present even though my ego would like to believe that it doesn’t. I know for certain that it does, though, from a recent wake-up call. I was having a conversation with someone elsewhere online in which I was commiserating and agreeing in the conversation as a fellow disabled person, but due to how I phrased something it came off offensively rather than in a supportive way.

Reblogging this below entry is “looking back at my mistakes, and wanting to make amends” post. Some of it I’m working out “out loud” in an effort to keep other parents from making similar mistakes that I made way back when and still make in spite of myself.

It’s been about eight years since I wrote the below entry. I was so excited because I jumped in feet first into being a parent that LISTENED versus one of those parents who pitied being a parent of an autistic child. I had turned my back on Autism Speaks and others of their ilk. I was speaking for my daughter, but it still came out with my voice. I came off as so. damn. smug.

I know now that my voice and approach came off as if I were speaking above autistic voices; as if I were an authority over them. That was wrong of me.

I placed myself smack in the middle of the Autism community, thus elevating my voice, as a parent. When I described the community as a whole in this post, I placed autistic voices first, but then I added everyone else and they all added up to be More Than the autistic voices. That was wrong of me.

Autistic voices should always, always be first. But this is what the rest of us forget: Autistic people ARE the community. The rest of us who are lucky enough to be in their orbits are only on the fringe of the community by virtue of their invitation by note of; their patience in answering questions; their love for us; their self-advocacy; their opinions about what doctors, therapists, teachers, scientists, agencies, and parents say and do; their personal stories about childhood, employment, relationships. It’s up to us to earn trust because it’s so easily broken. I hadn’t really learned that completely yet.

Sure I’m A Mom

As a mom I’m not even an authority on being a parent to someone who is autistic. Why not? I’m just one mom to one autistic daughter. I may have some insights as a mother, based on a learning curve, but almost all with thanks to listening to the real authorities: autistic bloggers, writers, authors. I may be a near-expert on my own daughter because she lets me in and I ask her questions and let her lead. I pay attention to her communication. I learned that imperative lesson from other autistic people who wished their parents had done that for them; and those whose parents did do that for them. Thank God for them.

My daughter was only seven-ish years old at the time that I wrote that entry. I’d only been following blogs written by autistic writers for a couple of years but in regard to autism, not exclusively. I hadn’t yet figured out how the different language issues were layered yet, and which other issues were severe social and family issues. I didn’t know how serious abuses were yet. I didn’t realize I could trigger someone with a careless word.

Implied Privilege

When I wrote that blog, I was listening to autistic voices but I didn’t necessarily hear them all of the time. I ‘m afraid I made the wrong issues more important than the people.

Worse, I used the privilege implied in being a parent who was researching and listening, albeit not hearing, to be heard and to advocate in a way that I thought was appropriate. Instead I sounded smug. I can only hope that I never passed along dangerous information in that manner. When I come across posts where I think that might be the case, or it’s borderline, I have and will either update or delete them. I don’t want to perpetuate harmful information and I’m sorry for that.

When I stumbled on this post again, it really embarrassed me. It embarrassed me because even though it was eight years ago, I think I still use the tone in it without meaning to do so. I also know that for some people, my sentence structure and grammar can come off as snooty and boy… is that evident in this post I dug up. I was going to either delete that blog entry, or update it. I’m a big fan, 98% of the time, of taking complete responsibility for something posted and leaving it up for posterity with the hope that someone can learn from my mistakes and hopefully see a progression from ignorance to, well, I guess “less ignorant.” More enlightened is my goal.

I chose to leave this one up because it represents a journey, and updating it or deleting it would have ignored the work our family has done to grow.

 

I Apologize

I’d like to apologize to autistic people for my ignorance, past and present. I may have learned things over the years that helped my knowledge, but not my pride. I’m sorry that over the years, I’ve spoken over your voices or in place of your voices as if I were more of an authority. I’m sorry that my hubris got in the way of my humility. Please know that it’s not something that I ever intended. Please know that I’m always open to hearing where I’m making mistakes, my language is inappropriate, my education is outdated. I want to succeed more often than not. I want to continue to work at self-improvement, open-mindedness, humility.

Intended or not, it still happened. I take full responsibility.

I hope that you forgive me.

 

From Harmful to Helpful?

How do I become more helpful to the community (including other communities) I want to advocate with?

  • Be mindful of past mistakes and current behavior
  • More active listening on my part
  • Listen more than speaking; this really is important, so much that I just said it twice
  • Don’t place my voice as an authority in a community in which I’m really only orbiting
  • Ask more often, “How can I help?”
  • Give credit where credit is due
  • Provide qualifiers when speaking such as, “In my opinion” and “In my experience”
  • Remember that plain language, not rude language, is appreciated
  • Remember that it’s not simply advocating FOR… it’s advocating WITH because
  • Go out of your way to make sure the people you converse with know that you
  • Those who have the disability that you don’t have are also self-advocating as a whole and for others in their group who may not be able to self-advocate

 

I know that as a parent, as a woman, I’m going to continue making mistakes because I’m not perfect. There are thousands of mistakes I haven’t even made yet. I’m going to do my best to be much more mindful of how and when my mistakes and failures occur so that I don’t make the same mistakes again, over and over. I can only hope that I’m not the same person I was eight years ago, and that I can grow each day without allowing my mistakes to define me.

I want to be a good example to my children. I hope this is how.  And now I need to press “Publish” but I’m kind of nervous about it. I don’t want this to sit in drafts for weeks or months.

 

If you visit various online communities you may notice that some people refer to autism in one of two ways. As autism or as Autism. As a mother of someone with Autism, I tend to use Autism when spe…

Source: Autism With A Capital ‘A’ | Ever So Gently

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I have a lot of thoughts that are combating the issue of palliative care regarding in-the-home versus in nursing homes. In the early-ish part of the summer we received the news that a nursing care home finally had an opening for both of my grandparents. I should clarify that the “finally” part is really due to the fact that it took a long time for them… well, I should clarify that “them” is really my grandfather agreed to the move and my grandmother threw the mother of all tantrums, but relented. Once my father and uncles made the decision for my grandparents, and once they informed my grandparents, it only took a month or so for a health care facility to open up space for them.

There was relief in this. A lot of relief, actually. The fact that they would have on-site 24-hour nursing care and a doctor on staff. Their doctor would be on call. Emergency care would be available instantly as needed. There are a couple of hospitals within minutes from the nursing home, if needed.

As soon as they moved in, my grandfather felt relief. He could see that he really wasn’t able to take care of her any longer. That was hard for him. Not being able to pick her up when she fell was something that had been normal for a long time, but the emergency paramedics finally told them that unless she agreed (or he forced her) to go to the hospital when they called 9-1-1 and she was clearly injured (she was) then they were going to stop coming to the house for her. Whenever he fell, he knew enough to go to the hospital. So that was the tipping point.

I spent my summer with the girls, off work and visiting my grandparents as they adjusted and took turns with one being upset at being there and the other saying how wonderful it was. Yeah. Being in your 90’s and married for 70 years can be like that.

A week ago we held a party for my grandparents at the nursing home for their 70th wedding anniversary, and it was beautiful. My grandmother looked beautiful. She held her rosary the whole time. As I was growing up, and let’s face it her entire life and mine since at 40-something I still feel as if I’m growing up, she always put herself last. She always put all of her focus on the person who was in front of her. She made everyone in that room feel special, and so when they came for her and my grandfather’s anniversary, they made sure that she felt special.

She wasn’t quite herself, and I could see that. The entire week prior, she’d been declining. Her mood shifted. She started seeing hallucinations. Night time was the worst. She hadn’t slept for two or three nights, and so the day before the party, when I visited, they made sure she slept. She was in a great mood for the party, but something had changed. She knew who we all were and why we were there but she heard music that we couldn’t. She asked and talked about odd things, for her.

And then this past week things got worse. My grandfather and uncle swore to me yesterday that she wouldn’t recognize me, but she did. She couldn’t move much, but when I held her hand she held it back as much as she was able, and even lifted it to point at my youngest daughter when she wanted to see her. She would pucker her mouth and move towards us when she wanted kisses. The whole time since being in the nursing home, that’s all she’s wanted, is kisses.

They swore she wouldn’t understand anything we said to her, but she did. She tried to talk to me, so I told her about my girls and my husband, how school and work were for them and how much I’m enjoying being a stay at home mom again. I knew she wanted to know about my pain levels too, but I avoided that topic. I told her that I finally prayed for what she had asked me to pay for, for her and that I’d done so at Church yesterday morning right before coming. She blinked a few tears and tried to nod, leaned for kiss, and I cried. I told her that I prayed for it even though I didn’t want it, because I know she needs it and she’s ready, and because I love her. I told her that I love her no matter what, and that I’ll be okay, that the entire family will be okay and she can let go.

We stayed, Darling Girl and I, for hours with her. It was very difficult to leave. We let the nurses know we were leaving, and then we saw my grandfather coming down the hall from his room with a priest trailing behind him. He told me that the priest just got there, and could I please stay. This was their parish priest. He was there for Last Rites.

So of course I stayed. We stayed. I held her hand. When she saw her priest, she gasped and said his name after not being able to speak for a few days. My grandfather was shocked because he had been 100% sure that she didn’t… couldn’t recognize anyone and nor could she understand what anyone said. It was beautiful from start to finish, and I never thought it could be. Maybe it was beautiful because it’s what she wanted.

Now it’s Monday morning, and my Darling Girl is sad. This is making her think about when my husband’s father passed away four or five years ago. It’s very similar, but she didn’t understand what was happening then. She told me this morning on the way to school that she’s remembering what happened to her Nonnu, but with a new understanding and so she’s feeling the experience of his death all over again as her great-grandmother is dying.

What she’s having trouble understanding is how my grandmother could be choosing to refuse to accept her medications, even the pain meds; how she could be choosing to refuse to accept any food or water. At 12 1/2 years old she knows how long a person can without food, and without water. I don’t know how to explain that to her, how a lifelong devout Catholic could choose, in her mid-90’s, to stop it all and to leave directions for the nurses, doctors, and family to refrain from any extreme lifesaving measures. It’s not rational to my daughter. I told her that as much pain as her great-grandmother is in from her illnesses, she’s in far more pain when she eats and drinks because her insides don’t work as well any longer, and she wants the pain to end. That didn’t satisfy her, and I know that nothing will. It sounds weak in my ears too.

Also this morning, Sweet Girl was having a really difficult time. She asked me last night to explain what was going on. She was more angry about getting up than usual, and complaining about everything that’s ever made her angry. I nearly lost my temper with her, and when I realized that my temper was shorter than usual I knew it was because of my sadness and the anxiety of the vigil. I realized my mistake, shifted gears and told her I recognized how sad she must be, and she could visit with me after school but that I won’t force her. She finally managed to cry, sad crying, and it seemed a relief to her to be able to identify with words what was wrong.

Dearest Girl, my eldest, turned 17 yesterday. She was amazing about me spending the day with my grandmother. She seems to be holding up well on the outside. In that way, she’s a lot like me. Being the eldest, like me, it’s natural. I know that she knows she can talk to me; she will when she needs to talk.

I don’t know how to do this. It just feels as if I’m doing it all wrong.

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When it comes to parenting, the books don’t always have the answers. Each book has a special parenting method, and if you just stick with that special method you’ll have amazing children. They’re grow up to be well behaved, respectful, intelligent, daily blessings of joy and love.

Those books are lies.

Most parents figure that out by the time their children are 1-to-2 years old. Sometimes it takes longer, but that’s likely due more to the temperament of the child and not the stellar parenting as followed from the advice in those books. They just might make it to 5 years old, but if that child really is just a totally chill little human being, it takes having a second child with a completely different temperament.

The books were worthless except as kindling until our third child. By then, I had realized that it’s not the book but the child, and every child has a different mother.

Every child has the mother they need because they’re all different people. The books should really only address the care, when it comes down to it. We need books that are honest and straightforward that will be Actually Helpful to new parents of babies, and stressed out parents of toddlers and teens.

Books parents need:

Mostly Judgement-Free Parenting Series

“How to Feed My Baby: Until he’s not hungry any more”

“How to Diaper My Baby: What’s best for your wallet, your tolerance for cutting coupons, your love of Pinterest, and ability to sew”

“The Best Ways to Get Baby to Nap: Learn baby’s sleep patterns, then work around it”

“How to Get Baby on My Schedule: Ha ha ha ha ha ha ha!”

“Toilet Training by One: Good luck with that one”

“How to Feed a Picky Eater: Give her what she likes”

“Discipline? Yes, always, your child is not your friend or best buddy”

“Discipline: You have more options than ‘spanking’ and here they are”

“Going Back to Work After Baby: Why not, after all Dad gets to and who’s to say that Dad shouldn’t be the stay at home parent anyway?”

“Staying Home/Going to Work After Baby: Budgeting, Care for Baby, Scheduling, Family Time, Let’s Work it Out!”

“How to Prepare for Going to the Hospital for Baby: includes a tear out sheet of “List of People to KEEP OUT OF L & D and Maternity” to give to hospital staff so that you won’t have to be the bad guy to family that you don’t want there!”

“Reasonable Expectations of Success and Mistakes: your child isn’t an extension of you”

“When Friends, Family, and Strangers Offer ‘Well Meaning’ Parenting Advice: Smile and Nod, and other non-violent methods”

“OMG My Teenagers Are Trying to Make Me Go Gray Overnight! and other things parents of three teens have been heard saying”

“Organic and Homemade! the story of the crunchy mom, whose baby ate only organic until he tasted his first Twinkie and realized there was an entire aisle of the supermarket his mom had been hiding from him, and other stories of perfect parenting gone awry”

“How Not to Say the Wrong Thing to My Teens and Make Them Cry, the story of the mom with three daughters, so really you have to know that there probably won’t be a happy ending to this story”

 

 

Yup… I’d have bought those.

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Trigger warning for abuse; trigger warning for abuse of disabled individual.

Every morning as I get ready for work, I put our local news on the TV. It helps me keep track of time as I also get the girls up for school. I know that there’s always the likelihood that I’ll hear a story that’ll turn my stomach and make me wish I hadn’t turned on the TV. Most of the time, I can get through the local negative news without getting upset. It’s the national news that tends to upset me more lately. Not so this morning.

In Connecticut’s capitol city, a woman was arrested on a felony account of “cruelty to persons” charges after her 17 year old son died from severe malnutrition and indications of abuse. He was autistic. The case is being investigated as a homicide. The office of the chief medical examiner reported Matthew Tirado’s “suspicious condition” to police; he was 5 feet 9 inches tall and only 88 pounds. There were indications of abuse such as lacerations, broken bones, and bruises on his arms, face, and chest; they describe his body as emaciated and skeletal. The woman reported as his mother, Katiria Tirado, only called 911 when he was vomiting. He died on Tuesday morning past.

This young man is going to need justice. If Katiria Tirado dares to use his disability as an excuse especially when there’s a healthy 9 year old girl in the house, I hope that the Federal Court system sees through her. There’s no acceptable reason or excuse in what happened to Matthew. I don’t care if he would only eat McDonald’s fries, smooth fruit yogurt, and banana bread; I don’t care if had challenging allergies and self-restrictions with food. There’s always a way.

It’s a mother’s job to find a way. It’s a mother’s job to DON’T ABUSE and DON’T MURDER your children even when, especially when those children are disabled.

When a couple chooses to have children they choose to take on everything that means. There’s an implicit understanding that disabilities could be involved and thus there’s an implicit understanding that as parents, YOU’RE SIGNING ON FOR CARING AND LOVING FOR one or more children that may have disabilities and challenges that you may or may not have expected. You make a promise when you choose to be a parent, and that promise is that you won’t abuse or murder your children. You promise to always do your best to provide for your children.

The children in this home had a roof. But only one was well-nutritioned.

I’m sure at some point someone will tell me it’s not my place to judge this mother; that there were possibly or likely circumstances I haven’t considered; that I haven’t walked in this mother’s shoes; that I don’t understand disabilities and how they can affect a mother or a family especially Autism; that I need to put myself in that mother’s shoes; that you can see yourself in her position.

To those of you who don’t know me because you don’t know this blog, and you think those statements will fly here or anywhere else:

Those comments make you a murder apologist. If you wouldn’t excuse the murder of a non-disabled person, then don’t excuse the murder of a disabled person especially if that murderer is the parent. I don’t accept anyone identifying with the side of the murderer and abuser of disabled people. I don’t tolerate it.

If you don’t know me or this blog, you ought to know that I’m a disabled woman. I have a teenage daughter that’s autistic. I have another teenage daughter with severe ADHD and ODD. I know what it means to have to cope with challenges, and to have my family cope with my disabilities in turn. But disabled or not, with disabled children or not, I wouldn’t accept what’s happened to Matthew Tirado. And you shouldn’t either.

If I seem a bit impassioned here, it’s because I’m feeling emotional. I can’t seem to calm down. I wish there had been an advocate for Matthew. As the investigation goes on, I’ll be following closely. I realize that I AM making some assumptions here, but I haven’t voiced the great majority of them. I just know that a grave injustice occurred and I’m sad and angry and grieving.

 

#MatthewTirado #Justice4MatthewTirado

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You know what I just realized? I write a lot about disability and advocating for disabled individuals. I write a lot about acceptance in disability, whether you’re a parent, friend, coworker, or even someone who has never met someone with a disability (that you know of); and yet I’m not sure that I’ve ever explained in the simplest of terms what a disability is.

I just get so fired up.

Disability is a physical, neurological, or mental condition that limits a person’s movements, senses, or activities. It may cause impairments, infirmities, and disadvantages, to performing activities in society due to the barriers that exist.

What I try to address is this:

Barriers exist not because someone is disabled, but because society as a whole hasn’t figured out how to:

  • Fully accept disabilities as normal and nothing to be ashamed about
  • Fully accommodate all disabilities and invest in the people who have them
  • Incorporate Universal Design so that ALL PEOPLE may participate in ALL ACTIVITIES equally

And those things are important because people who have disabilities are PEOPLE. People who are deserving of being treated with dignity, respect, grace, and equality to be viewed as valued members of society that contribute as equally as anyone else can.

This is a lesson that you’ll learn well when you become disabled through an accident, illness, or age if you’re not presently disabled. 🙂

 

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I’ve been sitting on this because it hurts my heart as the mother of an autistic daughter. It kills me inside. It makes me angry, sad, and wonder at the human race. It also makes me fearful and gives me those damned little worry lines.

I HATE wrinkles.

I hate it when ridiculous situations like this occur for absolutely no good reason. None at all. There’s no winner, especially when there was either improper training, completely inappropriate biases and prejudices, or both.

When One is Autistic and One is Black How Could the Officer NOT Try to Shoot Them?

/end sarcasm

 

Here’s the gist of it, because I assure you, no laws were broken and no one was disobeying any law enforcement.

An autistic man left the day facility with a toy truck, and decided to play with it sitting in the street. Where else do trucks belong, right? In the street. Logical and linear. The man’s therapist from the facility came out to help him back inside without incident. A seemingly good Samaritan called the police to come help, except it wasn’t just to get a disabled man from being injured.  It was how there was a dangerous disabled man from the facility had a GUN! and please protect the neighborhood. The therapist immediately puts himself flat on his back, hands in the air, and explains to multiple officers the actual situation, front to back. Except Mr. Happy Trigger decides he HAS TO fire his gun and aimed for the autistic person because hey, why not? He was playing with a toy truck in the middle of the street. That’s super dangerous when he’s not paying attention to anything because you know, it MUST be civil disobedience and worthy of being over. He aims his gun at the autistic man, he says, and he fires his gun three (maybe four) times at the autistic man who’s simply sitting there. A sitting target, mind you. He misses the disabled man and hits the black therapist in the leg. Who the hell knows where the other bullets landed.

Read that part again. The officer was actually aiming for the autistic person because he was playing with a toy truck in the middle of the street. And when the autistic person was ordered to get out of the street and was literally unable to comply, and behaved as if he couldn’t understand or hear the commands because he literally couldn’t, he wasn’t committing civil disobedience, he was behaving as a disabled person because he is disabled, Mr. Happy Trigger fired his gun.

At first he told the man he shot that he didn’t know why he fired the gun and shot him. Later he stated that he felt he personally was in mortal danger, and he needed to shoot the autistic person. He felt he had no choice but to defend himself.

He claims.

Yes he claims.

There’s a major problem here.

That officer’s trousers are ablaze, and everyone is choking on the damn smoke because that’s what happens when you speak untruths all over the place.

That police department has some serious issues and they need to decide which end is up because either:

  1. That officer was lying about regarding how he felt his life were in danger from the disabled man, and he fired at him anyway because he’s filth and is a really, really, really bad shot in which case why on God’s green Earth is that man allowed a gun?
  2. That officer was lying about trying to hit the disabled man and was really aiming for the therapist, in which case he was still lying about feeling as if his life were in danger since the therapist was laying on his back prostrate with his arms in the air and hey, he’s STILL a really bad shot
  3. That officer was afraid of a black man laying on his back in the street with his arms up, and an autistic man playing with a truck? A truck he knew wasn’t a gun?

 

If he was telling the truth… are we really that decayed as a society and still that unevolved that our police forces are AFRAID of disabled people that play with toys in the street? Or was it that the disabled man was autistic? Was that the magic word that made the officer afraid for his life? Autism?

I go there because I HAVE TO GO THERE. I go there because I have disabilities, and I go there because I’m a mother to an incredible autistic daughter. My brain has no choice because I don’t live in some fantasy land.

I know what the world is supposed to be like. I know what the Federal Laws are, and State Laws that supplement them and aren’t allowed to override Federal Laws. I know the fight that continues for Civil and Human Rights for disabled people, and the fight to be recognized as fully human versus being seen as Other and Less. I know the nightmares that people face every day in spite of the Americans with Disabilities Act and Title 9. I know that people can’t behave as if those Federal Laws fix everything, and society has fully accepted those laws.

I see people all the time who don’t even know that these laws exist, that give them rights to stand up to their parents and police officers and neighbors and landlords and employers. They don’t know that there are protections in place. They believe they’re really second class citizens because that’s how they grew up. And there are people who treat disabled people that way their entire lives.

There are police departments who train their officers that any appearance of disobedience, ignoring, noncompliance is tantamount to breaking a law and they’re allowed to respond to someone who isn’t even a suspect with force. Lethal force. Except lethal force is not supposed to be the go-to behavior.

I know far too many people who say,

“When the police ask you a question or tell you to do something, you do it. You be respectful. You obey no matter what. You obey anything an officer tells you to do at all times no matter what.”

It’s easy to say that, but it’s not how law enforcement is supposed to work. There’s supposed to be leeway. Compliance is not always an option because it’s not always possible.

There’s supposed to be compassion and understanding in spite of the officer’s past experiences of being an officer that excels in service. Having a previously spotless service record doesn’t absolve a public servant of an abominable act towards a marginalized person.

There are different reasons someone may not respond to an officer; there are different reasons someone may have awkward movements and motions. There are reasons someone may appear drunk and disoriented that have nothing to do with drugs and alcohol. Behaviors that might appear “shady” and facial expressions that might “look guilty” are often misread. There are different reasons that it appears someone isn’t obeying an order.

For people with disabilities these things aren’t a matter of choice. They’re a matter of disability. We can’t just shut off disabilities at inconvenient times, and yes, we’re allowed to leave our homes. After all, we don’t want to be a drain on your tax dollars.

Many people are not in the moment for one reason or other due to their disability. Interactions happen on the street when people think the disabled person is “being strange” and. People are paranoid and intolerant, and assume the worst. People are impatient with differences, physical slowness, and seeming intellectual disability. People don’t take care of others feelings, but expect their own to be catered to constantly and so they think that they’re being victimized by being looked at. Or they just notice weakness and take advantage. They steal more easily from disabled people. They make fun more easily. They get disabled people to do inappropriate things more easily making them think they’re going to be friends. Then, if caught, they blame it on the disabled person who has no idea what just happened. They think a toy truck is a dangerous object.

Someone who has particular physical disabilities could appear drunk even if they don’t have a single medication in their system if they’re made to try to walk a straight line. Or speech difficulties due to speech delays can make it difficult to answer questions quickly, or without slurring, in a manner that’s clear and concise. Compassion for none.

This is the kind of nightmare I have as a mother to an autistic daughter that is often unable to follow directions in the immediacy of giving them, especially if they’re presented in a way she doesn’t understand or by a stranger. She often needs things explained a different way than initially presented, but a lot of people who don’t know her are impatient at first. A police officer certainly would be. They would think she’s being impertinent if she thought to ask, “Could you ask that another way?”

As a young woman with disabilities, it turns out she really has no rights at all when it comes to the immediacy of being face with law enforcement if law enforcement doesn’t realize she’s disabled and they’re not keeping the ADA in mind. Her disabilities won’t be accommodated or even considered. If she can’t speak it won’t matter; her being non-verbal won’t matter a single bit. It will be viewed as noncompliance and therefore a danger to someone’s life. That will be justification enough for her to be cuffed or shot. And it will be her fault, of course, for being autistic and therefore dangerous.

It’s not our fault if we have disabilities; mental health, cognitive, intellectual, physical, TBI, chronic pain, hearing, anything. Anything at all. We can’t put our disabilities away into our purses, or into a drawer when we leave. We’re not being rude or thoughtless when we can’t overcome our disabilities like a rockstar.

We can explain as soon as an officer comes to introduce themselves and ask us our name, and it may not matter if they decide ahead of time that we’ve done something shady. They may have decided that a behavior they witnessed was “off” and needed their intervention, but it was actually due to disability. It could be explained to them but they’ve made up their mind. If a command literally… LITERALLY can’t be performed, it doesn’t matter. You’re DISOBEYING.

Do you know how many disabled people have been beaten and killed by officers because officers believed, and didn’t listen to the victims, that they were being disobeyed intentionally? That the disabled person was really a perp because they weren’t… couldn’t comply? There’s no difference between “won’t” and “can’t” because there isn’t any leeway for it.

There are in fact some police departments that care and are training their officers. It depends on the town and the departments. Some believe that the training and funding are worthless.

They have no idea that disabled people are far, far more likely to be bullied than non-disabled people; to be victims of abuse; to be victims of crime; to be involved in incidents with law enforcement. And when involved with law enforcement, disabled people are far, far, far more like to be victims and not the perpetrators. The reason it’s likely a higher percentage is because of abuse by law enforcement and misjudging situations where they assume that the disabled person is the perp because the real perp is manipulating the situation; and the disabled person is in a far weaker position if they’re being abused or the police are the ones exerting power. I want to say the percentages are in the 75% and 80%’s.

These fears are real. These things happen frequently. Yes, in this day and age in 2016. People are not enlightened, and they most often don’t really care. This is why parents fear for the day they pass away before their children and solid services aren’t in place; this is why parents fear when their governors cut funding to services that they federally don’t have the right to cut; why parents fear when siblings have washed their hands of their disabled brother or sister; or there aren’t any siblings, aunts, uncles, cousins willing to help out.

We fear that we won’t be around if our children become entangled in a situation that involves law enforcement in some way, especially if we have disabilities of our own whether we’re still young or as we age. We fear that our children won’t have an advocate at all; won’t have a good enough advocate; won’t know how to advocate for themselves.

It’s hard to trust a law enforcement system, a justice system, and a social system that repeatedly prove that disabled people are worth less than non-disabled people. When funding is removed forcibly and put into nonessential areas, such as bulking up a state official’s salary, it’s hard to trust.

 

 

Victim was therapist attempting to defuse situation with autistic patient.

Source: Black Man Shot By Police While Lying On Ground With Hands Up » Second Nexus

 

And:

Study Reveals Significant Overlap Between Police Brutality Deaths And Disabilities | ThinkProgress

And insufficient media coverage of these cases isn’t helping.

Source: Study Reveals Significant Overlap Between Police Brutality Deaths And Disabilities | ThinkProgress

 

 

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Yesterday, ASAN’s Ari Ne’eman announced he was stepping down at the end of the year. That was important. Here’s the announcement.

Organizations go through many stages. One of the most challenging and important are transitions in leadership, particularly when they involve founding members. Over the last ten years, I have had the honor and privilege of building and directing the Autistic Self Advocacy Network. That experience has been one of the single most important and impactful …

Source: A Message from ASAN President Ari Ne’eman | Autistic Self Advocacy Network

Then, prompted by the announcement, an entry was posted on ASParenting Blog by Melody. I credit and thank my friend Nora for making me and others aware of this disappointing report. Nora writes the blog A Heart Made Fullmetal.

I’m sharing Melody’s post about ASAN because as a mother blessed with an autistic daughter, I’ve looked to ASAN (Autistic Self Advocacy Network) as a guiding hand. I’ve shared them as a valuable resource to other parents and to autistic individuals that come into my workplace.

While I realize that the majority of experiences of employees are likely possibly maybe positive, if any of what is reported in this blog is true and a pattern, and indeed is policy then I don’t believe I could support that sort of agency.

In fact, I know I can’t. I wouldn’t encourage my daughter or friends or consumers in my agency to take advantage of them with what I now know, and therefore I wouldn’t encourage you. You are just as important as someone face to face with me when it comes to accurate, compassionate, gentle representation by people who are being treated well in their employment.

If it were ever guaranteed and proven that changes were made, that Autistic people were being treated with dignity and respect, being paid fair and competitive wages, being give reasonable accommodations, I might change my assessment. Trust is cornerstone. I know that. Accountability is, as well, and so far, ASAN has not taken accountability or responsibility.

I should warn you that there could be triggers in this blog article below as it mentions abuse tactics towards Autistic people, but it’s important to read. It’s a tough read.

With Ari Ne’eman’s announcement that he will be stepping down at the end of the year today, I knew I was out of time to find a large source to post what you are about to read. Please sh…

Source: ASANs Past Abuse and Moving Forward – ASParenting

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