Archive for the ‘advocate’ Category


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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I saw this on the news on Tuesday in a brief world news update. I’m going to give the trigger warning that this is about disability and harm, injury, and murder of disabled individuals. If that is too much for you to handle, please don’t continue reading. It’s taken me a couple of days to write this because A.) it’s emotionally traumatizing and draining and B.) I’ve been sick for the better part of three days and sleeping, but am feeling better today.

All they initially said was that a man stabbed over a dozen people in a home for disabled people.

When I heard this, I immediately went online to see what had happened. A man who was a former employee at a home for disabled people and aging people intentionally went in there to kill as many people as he could. This horrifying event happened in Japan.

It was initially reported that he was fired, but he actually resigned. More on that later.

He tied up the employees after he broke in during pre-dawn hours. All of the residents were sleeping. His intention was to kill as many disabled residents as possible, and so while they were sleeping, he murdered 19 people. He seriously injured 26 more people, some very severely. Oh… but not the non-disabled workers.

What’s outrageous is that he wrote a letter several months prior to the incident expressing his intent. He essentially wanted all disabled people with severe difficulties socializing and physical disabilities to be euthanized.

He was even committed to an institution earlier in this year, 2016, to prevent him from harming others after that letter. He resigned when he was committed. Unfortunately, for whatever reason, he was discharged from the the hospital in March and the hospital never informed the care center for the disabled people even though it was requested that they do so.

So. In a country where there are hardly ever any mass murders (thanks to not being allowed to own guns), and where this is the worst mass murder since WWII… that’s what, 70 years? and this is only a blip on the U.S. radar? It’s only being kept up with updates on CNN? Really?

Do we only have compassion for people who are mass murdered now if there are bombs and guns involved? If they’re in a European country? If they’re non-disabled?

Why aren’t we outraged?

This could easily have been in the U.S. considering the attitudes people still have regarding disabled people. Anyone who is Other isn’t worthy of notice, services, or the rights to life, liberty, and pursuit of happiness. Anyone in a marginalized group is Other. This has been made especially clear in Connecticut lately, if you’ve read my recent post on our Governor Malloy. There’s more to come on that ridiculousness if I remember to post about it, since that jackass spoke at the DNC, and he decided to use his disability to promote his political career. Oh hell, why not now. Governor Malloy, the governor of Connecticut, ranked tied for the worst governor in the entire United States, has mismanaged funds in the state so badly that we’re in a major deficit. Yes, he mismanaged the money. He’s ignoring that fact and telling us that it’s the “new economic reality.” He’s cutting funds everywhere he can for disabled people and aging people. For the Centers for Independent Living, the disability centers? He just cut our funding by 45%. Last year he cut us by approximately 35%. Five centers were running on only almost $500K between them in order to serve a growing disabled population due to a growing aging population. Just one center alone saves the state millions… MILLIONS of dollars a year. But he cuts the budget annually, and we have to justify why we should be allowed funding.

He gives lip service to disability rights and services. He talks about caring for us, tries to pretend he’s one of us. Except he doesn’t become OUTRAGED over the crisis of lack of services, and he doesn’t make damned sure that we stay in place to provide services in the agencies or social services or human services.

And no one is OUTRAGED when disabled people are murdered or harmed. No one is outraged. No.

Think about the sheer audacity it took to murder as many disabled people as possible at that Japanese facility, with the belief that their lives aren’t worth as much as non-disabled lives. That man believed he was performing a kind act… Euthanasia. What a nice, polite, kind-sounding word. Euthanasia. What a kind word to use in place of what he really did.

What he performed was an act of mass murder, there’s no doubt of that. Those people simply had neurological differences, emotional differences, physical differences, differences due to being aged. They weren’t animals that couldn’t be rehabilitated and needed to be put down. They were HUMAN BEINGS. They were murdered for being different and having needs that were different, accommodations that were different. This was Eugenics at work, people. Eugenics.

Euthanasia is a tool of Eugenics. Because is most instances, euthanasia isn’t carried out on a willing party. It’s carried out by someone who presumes that they’re doing a kindness to someone based on their own judgment of what someone else’s quality of life is. They assume that someone’s quality of life and value of life is worth less… worthless… if it’s not the same as someone who isn’t disabled. And somehow that gave him the power and the right to decide who lives and who dies. And there are doctors and family members who try to make this decision for other people every day based solely on the disabilities people have.

And who is outraged? Who is speaking out about this? Why isn’t this being condemned for the horror that it is? Mothers, daughters, aunts, grandmothers, sisters, fathers, brothers, uncles, grandfathers, sons, friends were murdered in cold blood. For no logical reason.

Oh… do I seem upset? It’s because I am. It could have been people you know living in any disability facility. It could be you when you’re infirm and disabled as an elderly person or after a car accident when you’re convalescing.

But the story hasn’t been about them. The story has been about the man who used several knives rather than guns to commit this crime, a crime so severe that it’s been 70 years since anyone did something so heinous in that country. Not the human lives that were actually lost. Not the fact that he callously chose disabled people and chose the time of day when they would all be sleeping.

Sleeping. Please let that sink in.

The murder of 19 disabled people and the severe injury of 26 more disabled people occurred during the pre-dawn hours when they were sleeping by a man who broke into a facility where they were supposed to be safe and protected. Because they were disabled. They were targeted because this man felt their lives weren’t worth living.

Be outraged.

Do you know what happens instead of outrage at the marginalization and murder of disabled people? Do you know why no one is outraged when rights and accessibility is taken away unwillingly? When services are defunded and ignored?

Because society still believes that disabled people don’t belong in society sharing housing and services. That disabled children don’t belong in their childrens classrooms, sharing space and air and teachers attention. Because society doesn’t believe disabled people are competent to make their own decisions just because they may need some extra physical help, medication, mental health service. People who don’t have disabilities tend to believe they “know better” than disabled people; that what they believe is for the benefit of the disabled, it’s for their own good, even when, especially when the disabled person is completely competent.

People tend to believe that any disability means someone is less intelligent, less competent, less capable of making decisions for themselves. Why? Why is that? Because they’re biased about their own disability? Of course we are! We know ourselves best.

I have chronic pain disabilities, and so do you know the first thing people say to me when I reveal that to them? They assume I’m addicted to pain pills and that narcotics were my first go-to treatment, and that I MUST BE addicted to something that I MUST GET OFF OF with their advice. Because nothing is worse than addiction. Nothing is worse than relying on medication to feel better, because THAT is apparently a step towards addiction. And of course chronic pain = doctor shopping for narcotics because I’m a pillhead looking for a fix because hey, chronic pain isn’t real y’all! And y’all know better even though I’m the one with the disabilities.

Nope.

I’m an educated woman, and I’m educated about my illnesses. I keep my brain active and remain educated. I work as homeopathically as possible to relieve as much pain as possible. I work with a respected specialist who monitors my pain management. I’m not on narcotics. I have a team of doctors I see regularly for check ups, just as everyone ought to do. I know my own mind. I know my body.

But no one believes any of that because I’m disabled.

No one presumes competency. No one presumes someone with disabilities has a good life.

That means that no one presumes to know that it’s insulting to feel sorry for people who have disabilities.

No one realizes that disabled individuals aren’t sitting around feeling feeling sorry for themselves.

No one realizes that disabled individuals are productive members of society; valued members of families and friendships.

No one presumes to understand that disabled people aren’t living in spite of disabilities, or to prove something to non-disabled people.

No one thinks about how ridiculous it is to believe that disabled people’s lives are less valuable than any other life, no matter how disabled they are.

No one realizes that it’s horrific to believe that life isn’t worth living if one has disabilities.

No one realizes how absolutely soulless and outrageous it is to believe someone is better off dead than alive if they have disabilities.

 

 

 

 

Former employee of Japanese facility for disabled people turns himself in after killing 19 people in a stabbing spree at Tsukui Yamayurien facility in Sagamihara, officials say.

Source: Japan knife attack: At least 19 dead – CNN.com

 

 The suspect in a stabbing spree in a facility west of Tokyo that left 19 people dead wrote of his “ability to kill” disabled people.

Source: Japan knife attack: Suspect wrote of wanting to kill disabled people – CNN.com

 

 

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Double-Chocolate-Chip-Swirl-Cookies- from Sally's Baking Addiction Blog

Double-Chocolate-Chip-Swirl-Cookies- from Sally’s Baking Addiction Blog

Let’s Play Pretend

You’re a nutritionist.

You’re a nutritionist that’s advising clients about how to choose healthy and healthier foods when they’re out and they have very limited options. You teach them about basic ingredients; whole ingredients and whole foods; which ingredients are all right when refined and which aren’t; which ingredients to always avoid; how to read ingredient labels; how to prepare meal plans and meals. How to shop for groceries.

Your client knows that fruits and veggies are the best choices. Include them in as many meals as possible. Find fats and oils from as many natural sources as possible. Avoid low-fat and low-calorie labels. Avoid sugar-free labels and artificial sweeteners. Avoid artificial dyes and high fructose corn syrup. 100% whole grains. Real ingredients. Real food. As much as possible.

All in preparation for how to be able to choose between poor options, and when to refrain from any options at all; and when it’s not healthy to refrain from making a choice.

The Day Comes

One day they’re at a party and there’s a cookie table. Let’s say it’s a political party. An election, even. At the back of the table, the fruit and veggie trays are out of reach and wrapped up and not an option. Apparently the best options are for later.

There’s a plate of cookies that are simple sugar cookie. They look fabulous.

There’s one plate of cookies that are sugar cookies with caramel in the middle. Also pretty delicious looking.

There’s another plate of cookies that appear homemade, and they have some chocolate chips; in fact, these cookies have chocolate chips on one half of the cookie and white chips on the other half, but your client dislikes chocolate chips. He thinks they’re disgusting. They also have some sprinkles on top. The sprinkles aren’t completely natural or healthy, but that’s ok. It’s just sprinkles. You can flick those off if needed.

There’s another plate of cookies, but they’re clearly not homemade. They’re supposed to be pumpkin cookies with white chips, but they’re so bright orange they had to be pumped full of dye. There are fire-hot cinnamon chips in them, so hot they’ll make you gag, and Lemon War Heads and Jawbreakers on top. Clearly these cookies are vile, and not worth another look because every ingredient will make your client sick. There’s nothing natural at all in them. They’re completely toxic.

Your client walks away for a while to see what’s happening at the party, but when he comes back he notices that the cookies he really, really wanted, the sugar cookies and caramel cookies, have been completely eaten up. He was too late. All he’s left with are the chocolate-white-chocolate chip cookies and the pumpkin-nasty-ass cookies. He knows the pumpkin cookies will make him incredibly ill, and even have far too many ingredients in them that will make him sick and even have ingredients he’s allergic to… but he desperately hates chocolate chips.

So he eats the whole plate of fake pumpkin cookies stuffed with nastiness, just to avoid the chocolate chips in the chocolate chip half of the cookies.

And he’s so violently ill, he’s vomiting orange for four years and regrets every damned bite wishing he had eaten the half and half cookies.

I completely understand that cookies, on principle, are not healthy. That’s entirely the point I’m trying to make in what I hope is an obvious parallel. And I must note on a personal level that Sally’s Baking Addiction has the most bang-up amazingly awesome cookies you’ll ever bake whether you have a nutritionist or not. You’ll bake your own just so you have an awesome choice at a political party.

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During this past fiscal year of 2016, our illustrious Governor Malloy (D) has brushed off all responsibility of the financial crisis our State is in. Between April and June 2016 he laid off 1,064 State Employees. He plans 2,000 more positions to be eliminated. and more budget cuts. All of this to cover his mismanaged $960 million deficit. That he created.

I’m not talking about froufrou State jobs like calling someone in to give the Governor a toilet seat filled with coins and dollar bills in his private bathroom. I’m not talking about dragging around a coffee and fruit & bagels cart on every floor, or cutting back from six assistants to only three. Not that those jobs aren’t important to the people who hold those jobs. I love coffee. That’s very well established. I love a great barista. And I would kill for a good assistant. But I’m talking about jobs that are providing services to people in dire need.

People that have disabilities are the ones who are suffering the most, with children and families not far behind. Aging population that have disabilities. When I say disabilities, I mean significant disabilities. Families and caretakers of disabled individuals. So, we’re talking about people who need and will need services like this for children, youth, young adults, adults, and aging adults:

 

  • Sign language interpreters were just cut from services provided.
  • Health care workers at UCONN Health Center
  • Social Workers, already short staffed
  • Department of Mental Health and Addiction Services; mental health assistants; caseworkers;
  • Department of Developmental Services
  • Department of Children and Families
  • Education Employees in several important Technical Schools

And just for fun…

  • Department of GOVERNMENT ACCOUNTABILITY
  • Department of Corrections
  • The Judiciary Department
  • Military

 

People like this young woman Jenny are being affected immediately. Dangerously. But Governor Malloy’s response is that while it’s unfair, it’s our state’s economic reality.

 

Connecticut’s largest health care workers union took to the airwaves Thursday to protest ongoing state employee layoffs.

The commercial launched by SEIU, New England 1199 and airing on Connecticut stations and the internet, features a woman, identified as Jenny, who is living with cerebral palsy.

In the 30-second spot, Jenny, who “speaks” using a computer that reads her eye signals, makes a direct appeal to Gov. Dannel P. Malloy to restore her state-appointed speech pathologist, identified only as “Mallory.”

“My name is Jenny,” she says to open the ad. “I was born with cerebral palsy. This computer is the only way I can communicate. Mallory is the only worker employed by the state of Connecticut who knew how to customize this computer so my voice can be heard. On May 3, Mallory was laid off. Governor, please bring back Mallory and all of the laid-off state workers. We need them.”

Malloy and the legislature built big savings in salary accounts across most state agencies into the $19.76 billion budget adopted last May for the fiscal year that began July 1. Officials cut spending more than $800 million below the level needed to maintain current services to craft a plan that does not increase taxes.

More than 250 of the speech pathologists and communications therapists New England 1199 represents at the Department of Developmental Services have received layoff notices.

(Cont.)

Source: Union ad features disabled woman’s appeal to reverse state layoffs | The CT Mirror

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I don’t write about this often even though I’m sure a lot of you could empathize. Fibromyalgia and weight issues often go hand in hand.

The thing is, it’s usually not for the reasons you might think. There are many who have Fibro that are underweight, and can’t seem to gain no matter how much effort they put in to make sure they get a calorie packed diet. There are many who are overweight and can’t seem to lose no matter how healthful and active they are in spite of the pain.  I don’t know if people realize just how hard it is to have an appetite when you’re in moderate to severe pain 90% of the time. Pain suppresses the appetite. Many medications suppress the appetite as a side effect. With Chronic Fatigue Syndrome as a co-diagnosis, it’s hard to eat if you’re so fatigued you can’t even chew or blink, let alone cook a full meal or go grocery shopping very often.

The fact is that no matter how healthfully we eat and are active in spite of the pain and fatigue, we have to deal with the biology of the disorder and additional health issues and co-diagnoses that are part of the very real chronic disorder that has a mind of its own. We do the best we can when we can as often as we can. We just hope it’s enough.

I’ve been fat, and I’ve been slender. I’ve been in between too. People treated me better when I was in between than when I was fat. People treated me far, far, far better when I was slender than when I was in between or fat. Because due to Fibromyalgia, my weight blew up to 280 lbs on a 5’4″ frame.

Give me a moment to digest the fact that I’m divulging this sort of information.

When I was That Fat, people treated me shamefully in public. People, nurses, treated me shamefully in doctor’s appointments. People feel obligated to say nasty things about food intake and exercise, and apparent lack of willingness to conform to anything healthy yet have the nerve to complain about being heavy. It’s still acceptable to fat shame here in America because A.) people think it’s helpful to point out the fat and ugliness of it and B.) they think it’s motivational to be rude and mean and C.) some people just think it’s funny to shame people due to their size and act like bullies.

Since I started to lose the weight, in the typical Fibro start and stop fashion, I have dropped 85 lbs so far. This number is accurate as of 1 1/2 weeks ago. And let me tell you, I’m thrilled over breaking that 200 lb barrier. It took me six months to do that with tripled efforts, which means for me trying to fit in 2500 calories a day with as much full fat in whole foods as possible. I try listen to my body when the fatigue takes me down. Managing the pain, managing the relief so that I could move more easily has helped. A few months ago we got a wonderful new mattress so being more rested helps.

During all of time, with each 15 lb mark of weight loss, I see and feel a difference.

Oh, not a difference in how I feel physically. My pain is still there in full force and in fact I’m in far more pain than before I started to lose the weight I gained. That weight that never belonged there.

There’s a difference in how people are treating me and looking at me. People are offering me their places in line again. They’re smiling at me again, more smiles with each pound I lose. More doors being held open for me, where when I was fat, people made it a point of looking me in the face and letting the doors close.

There are people asking me if I need help. People are complimenting me out of nowhere lately on my clothes when I run errands after work. Strangers.

People are noticing my pain now. They are actually seeing my face. They see the pain in my face AND my body, and then they see my cane, and they’re kinder.

I’m not behaving any differently. I’m still me. The only real difference is my weight. This all feels good because I never realized before how kindly people treated me when I was slender. I sure did notice while at my fattest how poorly people treated me. I was invisible to many, less important. Even certain family members. Slimming out somehow is legitimizing.

That angers me a bit, but saddens me more. I think maybe I don’t need to explain why. You guys are pretty intelligent.

But guys… I’ve lost 85 lbs. I know I’m poopooing it, but I am happy about it. Maybe my pain isn’t better, but I know that my risk of Diabetes is down; my risk of Heart Disease is down; and even though I have very low cholesterol intake, my body was producing more bad cholesterol on its own while heavier. I was also drinking more coffee, though, which raises the bad cholesterol readings. Yes…. yes…. while still a coffee fiend I did reduce my coffee intake to two cups tops a day.

My next goal is 25 more. I know it’ll be slow, and that’s okay. If I never lost another pound but suddenly magically had Disney Princess hair, I’d die happy in old age (somewhere in the far future, I hope).

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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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