Friday, January 29, 2016

Good Sportsmanship and Disability

KidsHealth defines Good Sportsmanship as when “teammates, opponents, coaches, and officials treat each other with respect.” They further go on to discuss that “the best coaches and parents encourage their kids to play fair, to have fun, and to concentrate on helping the team...”[emphasis added]. 

These bullet points break it down rather concisely:

Sportsmanship is defined as:
  • playing fair
  • following the rules of the game
  • respecting the judgment of referees and officials
  • treating opponents with respect
Rules. Respect. Fairness. None of these terms will probably seem foreign as you contemplate good sporting behavior.

But let's delve in deeper to the words respect and fairness.

Respect is defined by Merriam-Webster as “to regard (someone or something) as being worthy of admiration because of good qualities.” In the case of respect in a sporting event, one might relate this to the athlete's dedication, determination and ability.

Fairness is defined as “marked by impartiality and honesty: free from self-interest, prejudice, or favoritism.” This is a bit more complicated, but infers that one will not cheat nor will they exhibit behavior that will reflect poorly on other players or acquire some sort of special treatment for themselves. They will also not purposely behave in a way that shows they favor particular players and so forth.

Enter what this post is really about. This week, a viral news segment hit the mass media stating “Good Sportsmanship is not Dead.” It seems an undefeated high school wrestler in Norton, Mass. volunteered to wrestle an opposing team's player who happens to have an intellectual disability. According to the news, the undefeated captain let the disabled student win and is now an example for Good Sportsmanship everywhere.

I won't speculate that this wrestler did not actually let the his opponent win and that the wrestler with a disability actually won fair and square. After all, an intellectual disability does not necessarily affect strength. Oh wait. Too, late. But that is not really what this is about… This is about the definition of Sportsmanship. Did this wrestling jock actually perform good sportsmanship? Let's see.

Rules: Did the student follow the rules? One can only speculate that he did else one would hope that the referee would have made a call. 

RespectDid the student respect his opponent? No. It is quite obvious that the undefeated captain did not respect abilities or even consider the disabled wrestler might be capable. In fact, he disrespected him so much that believed that he had to throw the match in order for his opponent to feel good about himself. 

Fairness: Did he cheat? Perhaps. It depends on whether one considers throwing a match as cheating behavior. Did he exhibit behavior that reflected poorly on others? Yes. He publicly declared that he threw the match on purpose propagating the stereotype of disabled people as incapable and worthless. Did he exhibit behavior that would get him some sort of special treatment? Absolutely! Let us not forget, this student supposedly volunteered to wrestle the disabled student. This was calculated. Now he has become a viral media sensation overnight. One can imagine this looks good for his college applications. If nothing more, he gets to gloat in his moment of infamy.

So is it good sportsmanship to let a disabled person win because you feel sorry for them? Is it good to presume they are incompetent and treat them as such? Is it inspiring to read stories about typical able-bodied people feeling they are superior to those with disabilities? No. In fact, these stories though on the surface may seem inspiring to the average person, they are harmful to people with disabilities. They help spread the idea that disability=inability. They help the world continue to believe harmful stereotypes that are just blatantly untrue.

Disability is constructed by our culture and does not mean people are incapable or worth less than others. Until we stop spreading harmful stories like these, people with disabilities will continue to be treated as charity cases with few rights.

To better understand this idea, read:

Thursday, January 21, 2016

A Disability Exercise for Allies


You are born sighted into a world of unsighted people who have heightened other senses to navigate their world. Their sense of smell, hearing, and touch are exaggerated. But you, you can see and so as a consequence your other senses work, but not as keenly. But you do not mind because...SIGHT! You see colors and shadows and shades though you have no words to express these things. And though the human-made world such as buildings and structures are drab since the unsighted have created them, you see shapes and contrast against the colors of the natural world.

You see the blue sky, the green fields, the rich variation of nature and all its splendid colors, tints, and shades - Nature's Art. If only you had a way to convey this information to the unsighted. But alas, because they cannot see, there is no language to describe these things. You try, no matter.

When you attempt to explain to the unsighted about what you see, they tell you that you are not making any sense. They tell you that what you have to say is not meaningful. They tell you that you are disabled and therefore what you are attempting to explain is not good. They pity you.

They focus on your deficits. They worry that you cannot smell as intensely as they can. They fret over your inability to hear as acutely as they do. They fear that you will never be able to achieve great things in life because “what you see” is interfering with your ability to function in this world.

They tell you that they are working hard to find a cure for your sightedness. They hope to find a way to cure this bad sight and improve your good senses. They are working toward finding the “sightedness gene” so that they can prevent future cases of sightedness.

You feel broken. You feel bad. But you still cannot understand how seeing all the wonderful things is so wrong. If only you could convey what you see.

Then suddenly one day you notice another person looking up at a colorful bird flying overhead. They see you looking at them. They are sighted as well!
You begin talking about your experiences and find how much you have in common. You have mutual struggles – the inability to communicate what you see in words, the frustrations of trying to get the others to understand that seeing does not make you less – than but makes you unique, the fears you have of those trying to remove your sightedness from you, and the terrifying idea of preventing future sighted persons from being born. The struggles you have with others expecting you to smell and hear as strongly as they do. You decide there must be others and set out to find them.

Over time, you find others and form a disability community of sighted people. But while this happens, parents of sighted persons all over the world also attempt to join this disability community. Both want society to treat those with sight better. But the goals of the entities are very different.

The sighted people want to keep their sight and promote the goodness of sight. They know that being able to see is a wonderful thing for them yet acknowledge they are disadvantaged in this world due to their other weaker senses.

But the parents, they do not understand this. They believe that their children are harmed by their sightedness. The parents believe that the sighted only believe they are benefiting because they do not know any better. The parents say that the sighted are not able to make good decisions because they are disabled. They say the sighted do not have the capability to determine what is best for themselves. The parents fight hard against allowing the sighted to advocate for change in society.

The unsighted also hold power. They form large organizations dedicated to stopping and preventing sightedness. They recruit sponsorships from trusted corporations and celebrities.

Meanwhile, you and the other sighted try desperately to speak out against removing your sight. But the behemoth organization continues to drown you out with their massive campaigns that promote fear. They tell the unsighted public that sighted people are dangerous. They scream that the sighted are costing the unsighted too much money. And they promote the idea that the sighted are burdens to their families.

But you keep on trying to change the perception of sight. You still have no words to convey these beautiful colors that you see. You cannot accurately explain what it is like to see. You attempt to communicate how you are okay with your other sensory deficits as a sacrifice for this amazing gift of sight but no one listens. But you hope with all your heart that someone, someday will finally hear you. 

Now...replace sightedness with a known disability and read this again.

Wednesday, January 20, 2016

6 Signs You Are Living in a Mental Health Fantasy Bubble

You believe…

1) Calling 911 for a mental health emergency means trained “help” will arrive soon.
Reality? It is more likely the local untrained (lethally armed) police will be dispatched and potentially make the situation more volatile and deadly.

2) There are medical professionals that understand mental health issues waiting nearby to help in a crisis
when needed.

Reality? They are very few mental health or medical professionals available for crisis intervention. Most rural areas do not have crisis teams and defer to the 911 dispatch for a mental health crisis.

3) There are medications that actually work and with few side effects.
Reality? Few medications work all the time and often only provide some relief. Many if not all of them have undesirable side effects – some of which cannot be tolerated and can even be fatal.

4) Public spaces are safe spaces.
Reality? When one has to worry about their behavior being reported to authorities as odd or deviant, one is never safe in public spaces. See #1 above.

5) There are a variety of options for treating and living with mental health issues that are not restrictive and readily available.
Reality? Treatment today consists of medication (see #3 above) and for those who can afford it, psychological/behavioral interventions. There is a shortage in most areas for these services as well as a lack of consistency for providing evidence based programs and having the funds to pay for them. Most people do not receive the treatments or services they need. For those experiencing severe crisis, inpatient treatment consists of an extremely restrictive placement where patients are treated much like criminals. There are few supports available if any, for those living in their own homes. Worse, there is no tolerance by society for minor behavioral differences and so those who present with such differences are forced to either fit in or avoid public spaces (see #4 above).

5) Seeing a host of mental health and medical professionals guarantees one is receiving a high level of care.
Reality? The quality of care a patient gets is often left up to a combination of how diligent and educated about their diagnosis the patient is, luck – falling in with some good doctors and providers, and how close to metropolitan areas one lives – the closer to a city, the better the selection of services and providers. Even so, most medical doctors do not inquire about a patient's mental health. Most mental health providers do not communicate with the medical providers due to privacy law inconveniences.

6) Suicide prevention hotlines consist of help on the other end.
Reality? Sometimes they give little advice such as “go take more meds” or even attempt to involve authorities (see calling 911 above).

It is noble to spread Internet memes telling folks to reach out for help. But we need to put our money where our mouths are. The mental health help of television and movies is pure fantasy. It would be so easy if only the care was actually there.

Tuesday, December 22, 2015

Serotonin Syndrome - What You Need to Know

You are taking antidepressants (SSRI, SNRI, Tricyclic, St. John's Wort) or migraine medications (Triptans) or maybe treating a terrible cough with an over-the-counter cough syrup (dextromethorphan). Maybe you are taking a combination of drugs such as medication for a cough while taking your daily antidepressant. At first, you may think that the dizziness, chronic agitation, and fast heart rate are signs you just need to rest. But soon you develop seizure-like muscular twitches and jerks and perhaps uncontrollable shaking in the form of tremors that come and go. Perhaps you feel electrical-like jolts in your spine or head. You may have trouble sleeping and concentrating. When you see a health professional, it is concluded you are having severe anxiety, panic attacks, and/or [insert some psychological cause]. In reality, you may be suffering from Serotonin Syndrome - a poorly understood, potentially life threatening syndrome that is caused by excessive effects of serotonin on the nervous system and it is being missed by many health professionals.

A lot times, health professionals do not recognize the mild and moderate cases of this syndrome. When asked, emergency room professionals tend to dismiss the symptoms remarking that the patient is not “sick enough” to have serotonin syndrome basing this on the idea that patients must present with severe life-threatening symptoms for diagnosis. A study in 2013 by Cooper and Sejnowki found that 85% of physicians were unaware of this syndrome as a potential clinical diagnosis.

To help educate yourself about this syndrome, see Table 1 below for the symptoms.

Who is at risk?

Anyone who takes a drug that could elevate the amount of serotonin in the bloodstream is at risk. In the recent past, this syndrome was mostly associated with the class of drugs known as selective serotonin reuptake inhibitors, commonly known as SSRIs (Cooper & Sejnowski, 2013). Zoloft, Prozac, and Paxil are some of the most common brand names but there are many more. However this syndrome is not limited to these drugs which is part of the diagnostic problem; many other drugs used to treat depression, anxiety, nausea, migraine headaches, pain, and even over the counter common-cold remedies can cause this syndrome (Cooper & Sejnowski, 2013). See Table 2 below for a list of drugs that have been implicated in serotonin syndrome.

A little history

As far back as the mid 1950s, it was found that taking a certain prescription drugs could cause this syndrome. It is a little cloudy as which kinds of drugs were implicated first. One study implicates drugs in a class called HT3 receptor antagonists (Gillman, 1998). Drugs such as Zofran (ondansetron) are used today to treat nausea in a variety of disorders, including cancer, fall into this class. Another points to older medications used to treat depression - the monoamine oxidase inhibitors (MAOIs) like Nardil (phenelzine) (Cooper & Sejnowski, 2013). More recently, it was believed that only overdoses and combinations of high doses of these drugs could cause it. It is understandable why there is so much confusion in the field; the information about the syndrome continues to evolve.

What should I do?

If you are experiencing the mild symptoms of serotonin syndrome, see your doctor as soon as possible to discuss potential treatment options. DO NOT STOP MEDICATION WITHOUT THE HELP OF A MEDICAL PROFESSIONAL! ABRUPTLY STOPPING A MEDICATION CAN CAUSE OTHER POTENTIALLY SEVERE HEALTH PROBLEMS! Your doctor may discuss other medication options and begin a weaning process or even just reduce the dose of your medications to alleviate symptoms. If you are experiencing moderate symptoms, you need to seek treatment immediately – especially if you have a fever. Be sure to bring a list of all medications, including over the counter and herbal/vitamins you may be taking.

I am a firm believer in Western medicine. I don't particularly love our current fee for service health care reimbursement system and the inequalities that result but that has nothing to do with this story. What I do believe is that the West generally has some of the best medical research and providers of medicine in the world. Everyday we see new innovative ways to treat and prevent diseases that once were death sentences for our ancestors. But with the cutting edge of innovation in real-time, comes risk. We need a better system of information flow because too many people are getting sick and not enough professionals understand the cause.

Table 1 Symptoms

Mild symptoms include (Cooper & Sejnowski, 2013):
  • Tachycardia – an abnormally fast heart rate while at rest (not exercising or exerting oneself). For adults a heart rate > 100 beats per minute (BPM), in adolescents > 90 BPM
  • Shivering
  • Excessive sweating
  • Dilated pupils
  • Body tremors (uncontrollable shaking) or clonus (spasmodic jerky contraction of groups of muscles).
  • twitching or spastic muscles
  • Agitation
Moderate symptoms include all the mild symptoms plus (Cooper & Sejnowski, 2013):
  • Fever of 104° F (40 ° C)
  • Hyperactive bowel sounds
  • More severe twitching and inducible clonus (can actually bring the episodes on with stress or by just thinking about them)
  • Ocular clonus – eye ball twitching or involuntary movements
Severe life-threatening symptoms include all mild and moderate plus (Cooper & Sejnowski, 2013):
  • Hypertension – High blood pressure
  • Delirium – a confused mental state
  • Muscle rigidity – muscles are involuntarily tensed
  • Hypertonicity – resistance to muscles being stretched
  • High Fever > 105.8° F (41 ° C)
  • Metabolic acidosis – too much acid in the bloodstream (found through lab workup)
  • Rhabdomyolysis - death of muscle fibers and release of their contents into the bloodstream (found through lab workup)
  • Elevation of serum aminotransaminases and creatinine (found through lab workup)
  • Seizure
  • Disseminated intravascular coagulopathy – widespread coagulation of blood clots
Note. Adapted from Serotonin syndrome: recognition and treatment. AACN advanced critical care, 24(1), 15-20, by Cooper & Sejnowski, 2013.

Table 2 Drugs That Have the Potential to Cause Serotonin Syndrome


Ergot alkaloids

Methylene blue


St. John's wort




Tricyclic antidepressants

Valproic acid

SNRI: serotonin norepinephrine reuptake inhibitor; SS: serotonin syndrome; SSRI: selective serotonin reuptake inhibitor.

Note. Adapted from Drug-Induced Serotonin Syndrome. U.S. Pharmacist, 35(11) by C. Brown, 2010, 

Works Cited
Brown, C. (2010). Drug-Induced Serotonin Syndrome. U.S. Pharmacist, 35(11). Retrieved from

Cooper, B. E., & Sejnowski, C. A. (2013). Serotonin syndrome: recognition and treatment. AACN advanced critical care, 24(1), 15-20.

Gillman, P. (1998), Serotonin syndrome: history and risk. Fundamental & Clinical Pharmacology, 12: 482–491. doi: 10.1111/j.1472-8206.1998.tb00976.x

Tuesday, November 10, 2015

Abusive and Murderous Care-taking does not Evoke Compassion

A simple Google News search will turn up hundreds of results of abuse, neglect, and filicide (the murder of a child by a parent). Doing this search is not for the faint of heart. If you want to feel real pain for the suffering of children, by all means search away. The following are some snippets for which I am issuing a huge trigger warning; the details are highly disturbing.
  • Rachel Ball pleaded guilty to criminally negligent homicide, two felony drug counts and a misdemeanor of endangering the welfare of a child after her toddler, Kayleigh, died from drug exposure to cocaine and heroin in February 2015. Ball admitted to watching her boyfriend physically abuse Kayleigh, even leaving him alone with Kayleigh at times to do so.
  • In December 2014, Lindsey Nicole Blansett waited until midnight to enter her 10-year-old son Caleb's room with a rock and a knife. She hit him over the head with a rock and stabbed him seven times until he was dead.
  • In what is considered a family effort, Mary C. Rader and her parents Deanna and Dennis Beighley nearly starved her 7-year-old son to death. Children's Hospital of Pittsburgh staff was quoted as saying this was the worst case of child neglect they had ever encountered. He was less than 20 pounds when authorities rescued him. He also suffered injuries from beatings he incurred and was held prisoner in the family home. His three siblings all were healthy and attended school regularly.

Are you sick yet? Are you angry yet?

  • In January 2014, 17-month old Lucas Ruiz was poisoned to death by his mother who injected hand sanitizer into his tiny body causing acute alcohol poisoning. His father, who had also been feeding the tiny babe rum, was quoted as saying their son "would be better off dead, and that he wished he (the child) would die…".
  • In 2013, 14-year-old Alex Spourdalakis was murdered by his mother and godmother. First they forced sleeping pills down his throat and when that didn't work his mother stabbed the teenage boy multiple times in the chest as he lay in bed. She then slashed his wrist, nearly cutting off his hand while the godmother killed the family cat.
  • In April of 2012, 4-year-old Daniel Corby was drowned in a bathtub by his mother. She filled the tub, put him in the bath and held him under until he was dead. She then wrapped him in a blanket and put him the backseat of her car.

Do you feel compassion for the murderers?

You must be shaking by now. I know I am. As a parent I cannot fathom how anyone could ever think to hurt a child, let alone their own. The last three examples, Lucas's, Alex's, and Daniel's stories are often met with public sympathy for the murders, however. I hope after reading these awful crime snippets you are complete aghast at how one could feel any sort of compassion or sorrow for the murderer. I hope that you instead are feeling compassion and sorrow for the victim and the people who truly loved and mourn that victim; not the selfish murderous parent.

But society has given some leniency to killing people who are different than themselves. You see, these boys all had some form of a disability. And so it is with ease that you will find articles that dismiss the murders as “mercy killings.” There is no mercy in murder. There is no compassion evoked by these stories. By accepting the mercy killing ideal, society promotes that  people who have disabilities, who are different, are worthless and burdens. 

This is unacceptable.

A list of murdered disabled people can be found here:

Wednesday, October 21, 2015

Defending Yourself (How Not to Apologize)

Backpedaling would almost be acceptable. I wish I could say that the Autism Daily Newscast backpedaled when editor went on to [non]apologize for the pro-bullying article by Karen Kabaki Sisto last week. Instead, Ms. Hill issued a statement defending the article while only apologizing for the wording used. In other words, the Autism Daily Newscast apparently stands by the idea that bullying is good for autistic children because it is a great learning experience. Apparently autistic people and those of us who actual give a damn about them just need not be so sensitive about it all. You know, lighten up, people! How dare we suggest that our children and friends be treated like human beings - with dignity and respect? According to Ms. Hill,
"No matter how much energy and resources we put into making it a safe place for ourselves and our children, Shit Happens." ~Roberta Hill
So there you have it folks. Shit happens. And it seems then that there is no need to discuss that the "shit" must stop, or that the "shit" is unacceptable or that the "shit" causes irreparable psychological damage. In fact, no. We need to accept the "shit" and not only deal with it, but turn the "shit" into something good. At least Ms. Kabaki Sisto alluded to turning lemons into lemonade; Ms. Hill expects autistic people and their families to magically turn "shit" into a sweet smelling life experience.

[addenda @8:55 pm ET] This apparently is not the first time Ms. Hill has misrepresented or offended the autism community. In February, she ran an editorial misrepresenting the views of the Autistic Self Advocacy Network. When called on her mistake, she denied any wrongdoing and refused to change the article. You can read the story here.

Ms. Hill needs to check her allistic privilege and the Autism Daily Newscast needs a new editor.

Hill, R. (2015). My Response to the Outrage from the Autistic Community Regarding a Published Article - Autism Daily Newscast.

Friday, October 16, 2015

Trash Talk: Bullying Edition

When you search for data in a garbage can you're bound to get, well garbage. This idea is, not surprisingly, common knowledge among pretty much anyone who deals with any type of information processing. Programmers have for years used the adage “garbage in, garbage out” when referring to code. It makes a lot of sense then when science progresses and casts away old ideas to the scientific trash bin, that we file this old information and replace it with the shiny new, more correct data. After all, science's ultimate goal is to get as close to the truth as possible. But then there are those who are seemingly stuck in the past. This week, a garish example of such garbage reared its ugly head at the Autism Daily Newscast.

This past week, the Autism Daily Newscast published a pro-bullying article by speech and language pathologist and self proclaimed behaviorist Karen Kabaki Sisto, M.S., CCC-SLP. In her article, Ms. Kabaki-Sisto outlined the perks of bullying an autistic child; that is, the benefits the autistic child and a family get when the child is bullied at school. If that were not enough, she went on to defend her article on Twitter and Facebook (though she carefully never linked to her own article on these personal sites) by basically saying it was all about turning lemons into lemonade.

By her logic, we just cannot stop the bullies so we might as well get used to it and try to make the best of it; bullying is a learning experience. Since, there have been many analogies thrown at this scenario: rape, incest, murder, domestic abuse. One wonders if Ms. Kabaki-Sisto also feels these equally disturbing issues should be accepted as empowering experiences. You know, victims should actually be thanking their abusers for the PTSD. Really. In any case, you can read lots of responses as to why her dangerous assumptions are wrong at these links:

I began to wonder where Ms. Kabaki-Sisto got this very warped idea in the first place. I decided to do a little digging and ended up at her blog where I found numerous extremely outdated ideas about autistic people. One in particular was the idea that autistic adults had the minds of children.
“At the core of this argument is that for people of all ages with autism, the chronological or physical age of the person does not match the ‘mental age’ of their language, cognition (IQ; thought
processes), and/or emotional development.”
This is an extremely outdated view (like 1950s view) and in fact just wrong. It is now known that being autistic is not synonymous with having a low IQ. People on the spectrum tend to present with various levels of intelligence much like the rest of the population (Pickles, Simonoff, Chandler, Loucas & Baird, 2010). This timewarp does not seem to phase her, however. Throughout a lot of her writing, Ms. Kabaki-Sisto seems to want to infantilize autistic adults; that is, deny them the opportunity to be treated as adults.

Ms. Kabaki-Sisto also goes on to talk about forcing, physically if necessary, eye contact from autistic people. Not only is this known to be unnecessary, it can also be physically and psychologically painful for an autistic person. She defends her forced eye contact position stating that
...true feelings and intentions can only be seen when one looks at another’s face and body.

One might have guessed by now that Ms. Kabaki-Sisto has not been updating her research shelves because the latest data shows that eye contact can actually be detrimental to a conversation, especially if one is trying to be persuasive (Chen, Minson, Schone & Heinrichs, 2012).

So where is she getting all this old data from? This brings me back to my original thought of garbage in -garbage out. Ms. Kabaki-Sisto apparently gets her information from the garbage can. At the site where you can purchase her non-evidence based program (no efficacy testing has been done to date on her wares), you can find this little gem of a quote on her “Meet Karen” page:
“My persistence lead me to my speech-language department’s library. Of all the valuable information available there, the most influential item I found was - surprisingly - in the garbage can!”

Yes folks, you read it correctly – her information comes from the trash - old information that is no longer relevant. Concepts such like “Theory of Mind” deficits which has since become an extremely controversial subject and no longer presumed a deficit in autism spectrum disorders (Peterson, 2014), the idea that people on the spectrum also have severe cognitive delays or prefer child-like things from the early Kanner's autism years among many more questionable bits of misinformation. Oh, and of course lest we forget that bullying is a good learning experience for autistic children.

Science may not have all the answers, but I can guarantee you that using garbage as the basis for your “program” is not going to get good results.

Charman, T., Pickles, A., Simonoff, E., Chandler, S., Loucas, T., & Baird, G. (2010). IQ in children with autism spectrum disorders: Data from the Special Needs and Autism Project (SNAP). Psychological Medicine Psychol. Med., 619-627.

Chen, F., Minson, J., Schone, M., & Heinrichs, M. (2013). In the Eye of the Beholder: Eye Contact Increases Resistance to Persuasion. Psychological Science, 2254-2261. 

Karen's Straight-Talk. (n.d.). Retrieved October 16, 2015.

Peterson, C. (2014). Theory of mind understanding and empathic behavior in children with autism spectrum disorders. International Journal of Developmental Neuroscience, 16-21.