Tuesday, July 21, 2015

Celebrating the 25th Anniversary of the ADA and Still Tackling Subminimum Wages

"In the post-ADA world, Section14(c) is an anomaly in the law, and it is one that should be eliminated." -Samuel R. Bagenstos

I've spent the past several weeks having a dialogue with my local Goodwill. They are celebrating the 25th anniversary of the Americans with Disabilities Act (ADA) this month, and our paper featured the story, inviting all to attend the celebration. The article also centered on one of Goodwill's employees, a blind man living in our community.

According to the story, this man had a difficult time accepting his disability. A drunk driver caused him injury resulting in his loss of sight. He was eventually able to find work with our local Goodwill, which helped him regain confidence and purpose in life. He beamed a wide smile in the accompanying photograph. I'm glad he is part of my community.

I wrote into the paper after the piece was published, thanking our local Goodwill for their work but also drawing attention to the fact that many Goodwills in our nation take advantage of their disabled workers. Goodwill International endorses and supports smaller sects in utilizing a discriminatory loophole written in 1938, Section 14(c) of the Fair Labor Standards Act. It allows businesses to pay disabled workers subminimum wages. In 2012 Goodwill International had approximately 7,300 disabled employees making below minimum wage.

Goodwill International has been widely criticized for it's exploitation of these disabled workers in recent years. The story was featured on NBC and there is a petition with 170,000 signatures demanding they pay their disabled employees fairly. No apparent action has been taken by Goodwill International to remedy the injustice. They have merely defended their stance that it is lawful to pay these workers pennies per hour. They also claims that putting the disabled to work, even at these blatantly unethical wages, is a charitable act.

I informed our community of this in my letter to the editor because it is important that we have the full story, especially if we are celebrating such monumental gain as the ADA. While my local Goodwill prepares a free luncheon for the 25th Anniversary, some disabled person working in the same organization is getting a month's paycheck of a few dollars. I spoke out, lest this event become a complete ruse.

After my letter was published, my local Goodwill immediately reached out to me. They reassured me that all of their employees make above minimum wage and that they were proud to employ many disabled workers who would not be able to find work otherwise. In the spirit of transparency, they also invited me to their newly built facilities for a private tour with the top level execs in the branch. I accepted the offer.

Upon arriving at the Goodwill, I had the opportunity to meet with the CEO and president. He has been recognized in our community as a leader who does significant work to improve the lives of the disabled. I had hopes that we would find a common ground to discuss the unfair practice of paying subminimum wage to disabled employees. Unfortunately, in his opening words to me, I realized we were worlds apart. He said that they have not utilized section 14(c) under his leadership, because frankly, it was just too much work.

He then went on to explain why some Goodwills do pay their employees subminimum wages, and in line with his higher ups at Goodwill International, he defended their rights to do so. According to him, these Goodwills depend on subcontract work to stay afloat. They pay their disabled employees based on production, and the system of evaluating production and pay is highly regulated. He also made sure to explain that these workers receive support and education, in addition to their wages. At every turn, he justified the injustice.

I tried to explain, that if these Goodwills exist on a dated system requiring such cheap labor, it proves that they are pulling in some kind of profit. If they were just breaking even and running solely to put disabled people to work as a service to the community, they'd be scrambling to find another business plan. Non-profits want to grow so that they can help more people. Goodwill has no track record of idling by. This current system obviously serves Goodwill.

Supplementing subminimum wages with services like job training, education, etc is also inadequate reasoning. Many jobs have similar benefits on top of base pay. No one tells non-disabled workers how to spend their paycheck. Why should disabled employees have a portion of their wages paid out in services? These benefits are what Goodwill decides are best for them, as opposed to allowing the disabled person to use their hard earned money to live as they please.

I said that too. I told the CEO that disabled people work hard, and it's true. I don't know if there is a people that works harder. My words were met with a no they don't, then a quick retraction, well yes they do, hard for them.

He told me that for every parent like me, there was another one fighting to keep these underpaid positions open because Goodwill was the only one helping their (adult) children. These parents were thankful that their children had a place to go everyday and a purpose found through work.

This is because the disabled have always been offered subminimum care from our society. Any support is appreciated, but I assert these parents, and more importantly, the disabled workers themselves, aren't refusing equality and fair pay. They do not want the little help they are offered to go away. They can't afford it. They are trying to make the best life they can under societal neglect. Pennies on the dollar is better than nothing, so they resign to subhuman treatment given no other option.

I just want to go to sleep at night with out worrying that my disabled children will be similarly taken advantage of. All parents surely agree.

I thought that anyone so revered in his work for the disabled would at least notice that paying them subminimum wages was a wrong, rooted in the past, and in need of remedying. I thought he would acknowledge the practice as something that needs to change. I thought he'd say, we can do better! He didn't do those things. He is obviously a good person, a generous person, who wants to do right. But, he didn't grasp the very simple matter.

Wouldn't it be good if all disabled workers were at least paid minimum wage?

Wouldn't that be best? Better than now? Better for the disabled? Isn't that the least we can do?

For those that truly care about and serve the disabled, the only answer is yes. There is no need for debate, no need for defense, nor justification. There is only more questions, followed by our hard work.

How can we make fair wages happen?

How can we get from the wrong past to the right future? How can we be good?

Goodwill needs to do better. The charity needs restructuring. A new and equitable business plan needs to be implemented for the branches who claim to depend on subcontract work and cheap labor. The ones like my local Goodwill need to use their own profitable systems to assist the other Goodwills in doing so. They need to do this for their disabled employees and they need to do this to be a ethical, relevant, and forward moving charity.

I wrote again to the paper. I publicly challenged our Goodwill to move forward, and against subminimum wages. I hope they do. They thanked me and again invited me to attend their upcoming ADA 25th Anniversary celebration.

I appreciate them for first allowing this dialogue to happen, and then remaining welcoming to me, even in my opposition, but I will decline the invitation. Instead I will celebrate quietly, intentionally honoring my disabled children and the possibilities of an equitable future for them. I will celebrate my own disabled self, and every other disabled person I know.

A sincere happy anniversary! Here's to more monumental change.

Wednesday, July 15, 2015

Heather Clark: Why I #BoycottAutismSpeaks

ID: Rainbow water color background with text reading: Autism Speaks relentlessly erases Autistic adults from public perceptions in order to promote the myth of an Autism epidemic. Disease is ravaging our children, donate now! We can find a cure, donate now! Urgency, fear, panic, donate now! Meanwhile, EVERY myth about Autism will be cleared up when Autistics are rightly acknowledged and accepted. I #BoycottAutismSpeaks for Autistic Adults. Heather Clark on raisingrebelsouls.blogspot.com

ID: Dark rainbow watercolor background with text reading: The generation of young Autistics growing up now will either: believe that they are a burden, inherently wrong, and in need of a cure, OR, they will know that they are valuable citizens, deserving love, acceptance & inclusion. What will we teach them? I #BoycottAutismSpeaks for Autistic children. Heather Clark on raisingrebelsouls.blogspot.com

Information on how to participate! 
Crusading Against hate: Why I #boycottautismspeaks flashblog whyiboycottautismspeaks.wordpress.com
ID: Cream colored background with text: Crusading against hate: Why I #BoycottAutismSpeaks Flashblog. whyiboycottautismspeaks.wordpress.com

Thursday, July 9, 2015

#BoycottAutismSpeaks Crusade

Image description: Textured tan background with the text that reads, Autism Speaks is a business designed to profit off of ableism. They prey on Autistics and they prey on the well meaning, yet unknowing, general public. rasingrebelsouls.blogspot.com

Join the #BoycottAutismSpeaks movement in a twitter bomb TODAY July 7th 2015!!  Here is some information to get started. Next Thursday there will be a second gathering of protests in the Crusading Against Hate: Why I #BoycottAutismSpeaks Flashblog.  

Wednesday, July 8, 2015

Before I Had Autistic Children

Again inspired by Sparrow Rose Jones over at Unstrange Mind, the following is a letter that I have written my former self as it relates to my experiences raising Autistic children. 

Dear Heather,

You should know, I am proud of you from where I stand. You are a brand new mother, and with twins! Isn't it more beautiful than you could have ever imagined? Isn't it more hard too? I wish I could say it gets easier, but it's about to get real hard mama. Hang on to your heart. You haven't learned how strong you are yet.

Soon you will realize that your two darling children are Autistic. This will frighten you for many reasons, mainly because you have been taught to fear of disability. There is no need to be afraid. You might also spend some time thinking your dreams of motherhood have been broken. That time spent will be a waste. Love rules fear, and dreams will unfold in ways you cannot predict.

I want you to pause and remember that little girl who went to preschool with you. The one who cried her way out of every other school in town. She stood in the doorway with her little blue dress and tears as her mother tried to explain to the teachers that she was inconsolable. Then for some reason, she crawled into your lap and let you hold her, let you comfort her crying away. The reason was that you opened your arms. Remember that Heather.

You will be seeking support for your children and family. It will not come from the professionals you're directed to. In fact, the time you spend listening to "autism experts" will amplify your confusion and pain. They are part of the system that taught you to be afraid and must be rejected in order for you to begin understanding Autism. Help will come from loved ones. Help will come from people just like your sons.

When you get your head on straight, you will notice your Autistic kids are actually pretty rad. They are smart, sensitive, funny and perfectly made. They are your privilege. Your gift. Trust them and don't give their childhood away for "therapy". Guard their Autistic identity because too many people will want to wash it away. Give them time, love, and acceptance and they will thrive. They're the best people you'll ever know. Lucky you.

Take care of yourself mama. Love you.


Wednesday, July 1, 2015

Newsflash: Autistics Are Humans Too!

A few days ago, someone googled "autistic children no human soul" and wound up on my blog. 

Image of text: blogger.com, Search Keyworks, Entry, autistic children no human soul

I've had this kind of thing happen before, though nothing quite this callous. This idea, that Autistic people have no soul, exemplifies the ableism within our society and the kind of prejudice that Autistics face each day. To be a person in a world which views you as soulless, must be a staggering burden. Once again, irony strikes the Autistic community. We apply our own cold hearts to those we deem less. We break wings and then punish those that cannot fly.

It's difficult for me understand why I have to defend my children against such nonsense. This does not get filed under simple ignorance. It takes a really screwed up person to entertain the idea that a group of people are soulless. File it under straight up bigotry. Why do I have to insist that my children are human, when they wear the same skin as the rest of us? Why do they have to prove what's inside? My only answer; it's a whole big screwed up world too.

The neuro-majority, the non-disabled, the privileged, deny the humanity of those they hold below. It is much easier to take advantage of a people, while pretending they aren't actually human beings. It's easier on flimsy morals and might feel good to the ego, but bigotry is bad for the soul. This denial is so intense and encompassing, it allows the majority to make the obvious invisible. My Autistic children are real, living, breathing, human beings. Unbelieved, but definitely true.

Humanity is a birthright.

I'll make it clear and repeat myself until the screwed up world can no longer deny.

Blue and purple textured background reading: Autistic people are human, and if humans have souls, Autistics have 'em too. If this is news to you, examine your own humanity, your own soul. (rasingrebelsouls.blogspot.com)

Friday, June 26, 2015

On the Language of #Epilepsy

The other day while exploring for epilepsy information on the internet, I came across a comment "Don't call me epileptic. I have epilepsy. Epilepsy doesn't have me." I've heard this kind of comment before, though not specifically for epilepsy. Different disabled communities use different language to describe themselves, mainly people first, as in "Heather has epilepsy" or identity first "Heather is epileptic". What ever shall I call myself?

I began my learning of Neurodiversity in relation to Autism and the Autistic rights movement, however, the lessons I have since applied to my own neurodivergence, epilepsy. Autistics, as I have described previously, choose identity first language purposefully. I use Autistic in my writing and with my friends and family, not "person with Autism" out of respect for, and in agreeance with, their choice. I have taught my children that Autistic is a kind of person, not that they have anything. They are Autistic.

Because of this, when I began having seizures again, calling myself epileptic didn't phase me. There is a shamelessness that identity first language proclaims. It is more than the reasoning that Autism is inseparable from the Autistic individual, and therefore using terminology like "with Autism" or "has Autism" conflicts with a person's whole Autistic being. That's a valid justification, but identity first language is a rebellion too.

If our society views Autistic neurology as something that should come secondary, some thing that should not define the person, some thing that's shameful, insisting on being called Autistic anyway is a an act of defiance against those very sentiments. Autistic is a descriptor, not a thing which is less and therefore should be othered. Our neurology is not a thing. Our neurology is our whole person. Claiming the word Autistic in this manner is a refusal to be denied and a very matter of fact statement; I am who I am. So what? 

Of course, these neurotypes are quite different from one another. Epilepsy is a true medical condition, as opposed to Autism which is only falsely portrayed as a medical condition. Epilepsy is dangerous, but no one dies because they are Autistic. A cure for epilepsy would be terrific because of this, where a cure for Autism is insulting and absurd. If I were cured, I would still exist. The same is not true for my Autistic family and friends.

I also have the privilege of walking around life, for the most part, with my disability concealed. No one can see it until it leaves me paralyzed from head to toe. I can, though I haven't, compartmentalize my disability separate from my identity. Apparently, many in my community do this. After all, I've gone years and years without having seizures before. It would be easy to think of myself as Heather, who occasionally has seizures.

Epilepsy has changed me though. Made me. For better and worse, epilepsy is a constant in my life.

I am always at risk,
or at the neurologist office,
or adjusting my medication,
or hooked up to wires,
or hiding from lights,
or teaching my children emergency protocol,
or thinking of ways to keep them safe when I am down,
or wearing a medical bracelet,
or restricted from driving,
or afraid to leave the house,
or vulnerable,
or vigilant,
or worrying about the fact that I could die at any moment,

or actually dying a little bit each time I go down.

Epilepsy shapes me. It makes me do what I do, and think how I think, and live how I live. If my seizures ended today, my life would become more comfortable with time, but I will forever be altered by what has already happened. And what can I do about that? Perhaps in the future, if there ever is a cure, people will go in for some procedure and be done with epilepsy before it defines and describes them. In the meantime, I won't downplay epilepsy's significance in my life or deny my epileptic reality, because I want people to acknowledge that a cure is needed.

Yes, I am more than epilepsy. I am a woman, I am American, I am a writer, a mother, a wife, a friend. No one descriptor could define me fully. Just as Autistic tells you one aspect of the person, epileptic tells you one aspect of my person. I won't pick and choose, or separate my identity according to the assigned shame, then present myself as the goods, with the thing being secondary. Epilepsy is a way of life. My life. I expect and deserve to be accepted, dynamic as we all are, without having to hide my neurology.

My privilege in the greater disabled community, that most people do not realize I am disabled and therefore grant my person more respect, requires me to act boldly in our self defense. When I call myself epileptic, which I decidedly do, I challenge shame. I let the world know, I am not going to sideline an important part of my being, in order to be found more acceptable. Because I am able to prove my competence before people recognize my disability, my voice is given more credence, and my defiance helps other disabled people define themselves shamelessly too. 

I can't help what my brain does and I won't pretend that I am stronger, or separate, or any different than my most disabled moments. The next 72 hours of my life will be spent with electrodes glued to my scull. Then I get to do it all over again next week. It's hard. Epilepsy doesn't have me either though. Epilepsy is me. I am the face. One of 2.2 million epileptics in America, and one of 65 million worldwide. Call me what I am. Shameless, defiant, and even proud. Call me epileptic. So what?

Saturday, June 13, 2015

#Epilepsy and Childbirth

I follow no order.

I am electricity refusing path.

I am madness.


I am none of the above.

When I was in labor, I had a very strange incident in the hours before I delivered my twins. I had an epidural port placed, unsure whether I would need pain relief and not taking any chances for what could be a difficult birthing process. At some point, it was suggested that I get the anesthesia, or it would be too late. I agreed, though if I had been a better self-advocate at the time, I would have likely opted out. A minute or two after the medication was administered, I became very ill.

At the time, we believed this was somehow caused by the anesthesia. That seemed suspect though, because my symptoms were not a typical reaction to over medication. The doctors and nurses could not pinpoint just exactly what was wrong with me. The many machines I was hooked up to all showed normal findings. Oxygen levels, heart rate, the vital signs of the babies, all good. I now know that what I experienced was a seizure.

My seizures do not appear to be seizures to the untrained eye. It seems as if I am fainting when my blood turns to lead and I am pulled to the floor. I have even been dismissed with -looks like she had one too many- as if I am intoxicated when my brain tricks me with auras and visual distortions. The many machines I was hooked up to during this particular seizure, could not have caught my brain electricity misfiring. The best Doctors in town may not have made the connection. It has taken me years, and loads of other seizures, to recognize it myself.

The sensations I experienced were typical of my seizures. The distinct feeling that something was wrong, visual distortions, paralysis, inability to speak, fading to black, grappling with death all the while, conscious but unable to prove it aside from blinking my eyes. The postictal experiences were the same as well. I threw up and was extremely exhausted for an hour or more. Just as I came to, my Doctors wheeled me into the room for delivery. The babies couldn't wait. I did what I had to do.

I wish there were lessons to learn from epilepsy beyond simply knowing that my brain is dying a bit each time. I suppose I should acknowledge the strength within me it took to go through all that, survive, and have two healthy babies in the end. There has to be some other mother or person who can relate. I hope it brings them the same comfort I feel when meeting people with similar circumstances. None of these things seem enough to balance the brain I've been given.

It's been a long while since I had my last seizure. May time keep putting distance between then and now. I hope the same for all.

Wednesday, June 10, 2015

Terrible Things "Autism Professionals" Say

I just finished reading an excellent essay over at Unstrange Mind titled "S is for Stop Saying Savant Syndrome and Splinter Skills" written by Sparrow Rose Jones. Because my children are twice exceptional, both disabled and gifted, these descriptors have been applied to them by several "therapists" and "autism professionals". One in particular said something that still irritates me to no end. As I described one of my children's strengths in reading she responded with;

"We call those Swiss cheese brains."

This is a terrible thing to say about someone you are supposedly serving. She considered my child's wonderful brain, his wonderful person, as a piece of cheese with holes in it. It was her, the highly skilled "professional", that would fill in these holes and return my child whole. As if she, lacking respect, lacking empathy, and lacking understanding, should have authority over deficits to be addressed. If my children have Swiss cheese brains, you, benevolent "therapist" have a Swiss cheese heart.

I cannot believe I subjected my children to this industry. I regret.

After reflecting on this gross display of ableism in my children's "therapy" experiences, I began thinking of other blatantly ignorant comments we've heard over the years from "autism professionals". This kind of narrow minded thinking is rampant within the "therapy" system aimed at Autistic people. It's unavoidable, and damaging to both the Autistic person and their loved ones.

"A stim is anything that they do over and over that doesn't have any meaning or reason behind it."

No, Autistic people have valid reasons for their actions. Stimming is not only a way to self soothe, it is also a form of self expression. When you eliminate flappy hands, or jumpy legs, or rocking, or toe walking, you are taking away the very things Autistic people need the most. They need to self soothe in a world that was created with them on the bottom. They need to communicate their feelings and thoughts in any way that they can access. Stimming is a dynamic and important aspect of Autistic culture. It's not to be dismissed. 

"Quiet hands."

No, my Autistic children learn more when they are allowed to move their hands and bodies. They also take in information through touching and doing. Teaching them to respect the personal space of others, or to keep their hands to themselves, is very different than seeking to control their movements because it looks Autistic. It's quite alright to express yourself with your hands. It's fine to flap.

"The book I recommend that has the whole picture and everything you need to know, is Age of Autism."

No, Age of Autism is one of the most disgusting and erroneous books written about Autism as is the community of parents, which produced it. My Autistic children aren't diseased, and treating Autistics as such, with miracle "cures" is in fact deadly. Recommending that book is endorsing medical torture.

"You'll get burnt out. You should put them in school."

No, it is actually the therapy and public school wringer we get put through that causes so many parents to become exhausted. Having my children in the public school system, which segregates them from their peers, "helps" them with more repressive therapy, and forces me to fight for the basic accommodations they need, will not revive my spirits. Nor will it benefit my children's education. Predicting our failure is only detrimental.

"Here's your golden ticket to services," (gives me a diagnosis written on prescription paper after spending a total of five minutes with my child).

No, the only service we requested was help in determining whether or not our child is Autistic. The services we already have been offered seem to stress my Autistic children more than helping them. A golden ticket on the trauma-train is no gift. A diagnosis of Autism requires time and expertise, which has clearly not been offered.

"Some sensory kids have selective hearing."

No, selective hearing is a choice. It's something that tired husbands do when they don't want to mow the lawn. My children do not have a choice in the sounds their ears can focus on and process. They actually work really hard to hear others. They do not intentionally ignore, so do not associate their challenges with choice.

"Come back when he is six and we can check if he has developed theory of mind. Then we'll get a better gauge on whether he has Asperger's or not."

No, the evaluation processes designed to diagnose Autism are based on misconceptions. The theory of mind theory is fallacy. This is ironic because those that give validity to these poor assessments, seem unable to imagine the Autistic experience. These "professionals" are only able to project their own flaws onto the Autistic person. No one is willing to learn about how their own minds work from actual Autistics. Extending theory of mind never crosses the mind of the evaluator.

"This school only does soft ABA."

No, we'd rather not treat our children as blank slates to be programmed. We respect the horrid and abusive roots of ABA and how it has harmed the Autistic community. To distort or water down the damaging approach is still unacceptable. Nothing is "soft" enough to erase the history of electric shock with which this "therapy" is founded in. The ends do not justify the means, and the end result in ABA, indistinguishably, withholds the Autistic person's basic rights to self autonomy.

"You know what they used to do. They'd put vinegar in their mouths for saying those things. My mom did it to me with soap. It worked."

No, adversives are abuse. Just because a person learns how to avoid being abused, does not excuse the abuser. We don't get to hurt Autistics and call it help.

"Don't be a cry baby," (One child repeating what a therapist said to the other, through echolalia. I was not there to hear it directly, as the therapists asked me to leave because I was a distraction). 

No, my Autistic children are not cry babies. They are sensitive and were being pushed to do activities that were too much and even painful. They are brave, despite being put in terrifying situations like forced shaving cream "play" and having their bodies controlled by authority figures. Bullying a child is pathetic.

"Your problem is their behavior. They're smart, it's just the behavior."

No, the real problem is that Autism "professionals" seek to eliminate Autistic behaviors, as opposed to understanding the reasons behind them. Behavior, also known as communication, is allowed for typical children, however, it is not good enough for Autistics. Another problem, as is evident in this list of bigoted comments and actions from non-Autistic individuals, is that these "professionals" have some poor behaviors themselves.

"They're not table ready. They aren't ready to learn."

No, the false notion that learning happens behind a desk is ridiculous. My Autistic children learn all kinds of things from how to climb a ladder to how to fly a kite by doing and moving and being free from the confines of a desk. To live is to learn. Sitting down has nothing to do with learning and everything to do with control and power.

"I know you said you are not interested in ABA therapy, but I highly recommend ABA therapy in our clinic."

Thanks for nothing.

Like I said, I regret.