I’ve been doing a lot of thinking about how my dreams and ambitions have really suffered and been stunted, because I’ve felt compelled to pursue them along neurotypical lines. I’ve somehow believed that if I followed “the rules” — of engagement, of customary behavior, of social interactions, of the right job or locale — that […]
Born on this day, Edward Verne Roberts was an American activist. The first student with multiple severe disabilities to attend the University of California, Berkeley, Edward was a pioneering disability advocate. A campus at the prestigious university has been named in his honor. In 2010, he was recognized in a state day in California. In addition, his wheelchair has been preserved at the Smithsonian, “in recognition of obstacles overcome.”
Google featured this little known but important figure in today’s doodle. They also provide an online video and exposition dedicated to Roberts and the history of the disability rights movement.
“So I decided to be an artichoke—
prickly on the outside but with a
In addition to the informative links above that tell of the life of Edward Roberts, UC Berkeley has archived his oral history.
An autistic blogger discusses friends and friendship in this thoughtful essay.
It’s hard to make friends when you’re a grown up. Plenty of neurotypicals struggle with it, it’s certainly not just autistic people who find building new friendships hard. The problem with building friendships, is that you have to invest time and energy in people, in the hopes that you will like them, they will like […]
A little girl, a free spirit, loved to spend hours absorbed in the sights, sounds, and smells of nature. She saw herself as a caterpillar, “set free upon endless green, nibbling at the gifts before her.” That is, “until the rain came.” Caterpillar became Butterfly, lovely and able to reach great heights. However, as she did so, her world became both smaller and larger. Everything was unfamiliar and ever-changing. With all that was good, also came evils Caterpillar had never known. Yet she was able to see “Caterpillar Land,” and realized that “butterflies don’t have to let go of the caterpillar to fly.”
In the same manner, Samantha Craft goes between adulthood and childhood, relating each one to the other. The challenges of Butterfly are those of an autistic woman on the higher end of the spectrum – Asperger’s. Craft offers 150 vignettes of “everyday Asperger’s,” providing an insight into living with – and ultimately accepting – the condition. Though most of the time, Craft speaks as Butterfly, in some of the pieces, she ventures into memories of her childhood and teen years, when she was Caterpillar. These vignettes are not in chronological order. I fact, at times they seem random, a reflection of the thought process of someone with ADHD, a condition that often accompanies autism. Yet, everything is held together by the book’s theme of describing life with “Everyday Apserger’s.”
Early on, Craft refers to herself as “an autistic woman” and “an Aspie,” not “a woman with autism” or “a woman with Asperger’s.” These conditions are not something she has; they are who she is. This is the essence of the neurodiversity movement, as described by Craft’s colleague, Steve Silberman, in his groundbreaking book, NeuroTribes.
Craft writes with a spirit of humor and warmth, both of which are present even in her darkest moments. Craft earned respect and gained a following with her essay, “Ten Traits (Females with Aspergers,” which is included here. Since then, more and more women (and men) with Aspergers have recognized themselves, identifying with Crafts adventures and misadventures, and Everyday Aspergers is the product of ten years of such essays. “This journey is all about my identity,” says Craft. “I’m trying to figure out how Asperger’s defines who I am as an individual.” This early essay sets the tone for such questions as what role she would like to play, as an alien dropped down from “Planet Aspie” to a world in which they are wired differently. Or is she different? Most likely, in keeping with the theme of neurodiversity, we are all different. That said, Craft still acknowledges the importance of people with Asperger’s in recognizing when they commit social faux pas and how to best adapt to society at large and find peace within themselves.
Most of the time, epilepsy is an invisible disability. That is, until it strikes unexpectedly. Epilepsy is a disease of the brain characterized by seizures, uncontrolled and involuntary spasms. This condition lurks in more than 2 million children and adults in the U.S., 1 in 26 people.
November is National Epilepsy Awareness Month. The Epilepsy Foundation has a twofold aim:
- Raise awareness of epilepsy, that people with the condition have special needs and need the understanding of the public. At the same time, people with epilepsy can and do lead ordinary and extraordinary lives.
- With this year’s theme of #AimForZero, educate people with epilepsy on the four steps to prevent sudden unexpected death from epilepsy, with its significantly higher mortality rate:
→ Taking medication as prescribed
→ Getting enough sleep
→ Limiting alcohol consumption
→ Striving to stop seizures.
It is important to distinguish between epilepsy and a seizure. When someone has had more than one unexplained seizure (e.g., not due to head trauma), “the underlying and enduring tendency to have seizures,” that person is considered to have epilepsy.
According to the Centers for Disease Control and Prevention (CDC), there many types of seizures, ranging from a temporary state of confusion to a series of convulsions serious enough to cause the person to fall, shake, and become unaware of what is happening. These many seizures, however, fall into two primary groups:
Generalized seizures. These seizures affect both sides of the brain. The two main subtypes are:
* Absence, or petit mal, seizures, which appear as rapid blinking or briefly staring into space.
* Tonic-clonic, or grand mal, seizures, which can cause a person to fall to the ground, go into convulsions, cry out, or lose consciousness. (Tonic describes muscles that become stiff; clonic refers to periods of shaking of parts of the body.)
Focal seizures. Also called partial seizures, these spasms are located in a single area of the brain. The three main subtypes are:
* Simple focal seizures, which can lead to twitching or a change in one’s sense of taste or smell.
* Complex focal seizures, which are severe enough to cause a person become confused or dazed; he or she will be unable to answer questions for as long as several minutes.
* Secondary generalized seizures, in which the person first has a focal seizure followed by a generalized seizure.
Know What to Do
Although epilepsy affects 1 in 26 people, about 1 out of 10 people has had a seizure. Therefore, it is very important to know what to do, especially in the case of a tonic-clonic seizure:
Keep calm. Ease the person to the floor to prevent injury from a fall.
- Place something soft and flat (e.g., a folded shirt or jacket) under the person’s head to avoid injury and keep it inclined. This also ensures that he or she won’t choke on saliva
- Turn the person gently onto one side to help him or her breathe and further prevent choking.
- Clear the surrounding area of anything hard or sharp to avert possible injury.
- In a crowded space, ask any onlookers to leave the area.
- Remove eyeglasses or sharp jewelry; loosen ties or anything around the neck.
- Time the seizure. Call 911 if the seizure lasts longer than five minutes.
In addition to response, offering care and comfort is critical and applies to any type of seizure.
Follow these general steps:
- Remain with the person until he or she is fully aware.
- Help the person sit in a safe place. Briefly explain what happened. Reassure the person and help everyone keep calm.
- In a crowded place, ask any onlookers to leave the area.
- Check for a medical-alert bracelet for important medical information.
- Do not hold the person down; doing so could hurt you or the person. Likewise do not put anything in the person’s mouth.
People with Epilepsy Speak Up
To spread awareness of epilepsy, famous people with the condition have decided to “Talk About It!”
In our home state, New Jersey, Jessica Keenan Smith has created an advocacy group and website, Living Well with Epilepsy , to raise awareness of epilepsy and, through guest wrtiers, “what it means to have seizures.” She is also promoting the Epilepsy Blog Relay for the month of March 2015, with the theme as “EPILEPSY AWARENESS: Maximizing Collaboration, Eliminating Stigma,” by having guest bloggers comment on four sub-themes:
- Epilepsy in everyday life
- Tech and innovation in epilepsy
- Epilepsy and families: awareness matters
- Creativity and epilepsy.
By becoming knowledgeable about both first aid and the condition itself, we can be true disability advocates.
Did You Know?
About 1 in 26 persons in the U.S. will develop epilepsy sometime in his or her lifetime, that is 2.2 million Americans and 50 million people worldwide. That figure is greater than the number of people with autism, Parkinson’s disease, multiple sclerosis, and cerebral palsy combined. Equally perplexing, 70 percent of cases of epilepsy have no know cause 70 percent of cases of epilepsy have no know cause.
Descriptions of epilepsy are as old as writing itself. The ancient Greeks called epilepsy the Sacred Disease, in the belief that the condition was, on one hand, a form of spiritual possession and, on the other, a sign of genius and the divine. The famous physician Hippocrates rejected this notion, citing heredity as the cause.
The terms grand mal and petit mal have been used for many years, even among physicians. However, as they are French for “large evil” and “small evil,” they are becoming unpopular among people with epilepsy.
Though “sick and tired of being sick and tired”and suffering the effects of her disability, Fannie Lou Hamer was a tireless advocate, fighting racism and other forms of bias during the Civil Rights era. We honor her memory on this day, October 6, what would have been her 99th birthday.
Being kicked off the plantation on which she worked for more that 20 years was one of the formative moments of her life. This action was in retribution for working to register fellow African Americans to vote in her native Mississippi during the summer of 1962. She was not defeated; in fact, the event strengthened her resolve. “They kicked me off the plantation; they set me free. It’s the best thing that could happen. Now I can work for my people,” she said.
The following summer, in 1963, her fight for justice landed her in a Winona, Mississippi, jail. There, she was beaten savagely, causing permanent kidney damage. She already had surgery in 1961 to remove a tumor; the doctor also removed her uterus against her consent. Nevertheless, she kept on fighting and, in 1964, her speech at the Democratic Convention raised national awareness of the Civil Rights struggle. Despite setbacks, Fannie Lou Hamer carried her struggle for the rest of her life, until 1977, when she died of complications from heart disease and breast cancer. At her funeral, Andrew Young Jr., a U.S. delegate to the United Nations, in his eulogy said, “None of us would be where we are today had she not been here then.”
Darren Walker, President of the Ford Foundation makes a public effort to include people with disabilities. He explained his organization’s initiative on the foundation’s blog in an open letter, titled Ignorance Is the Enemy: On the Power of Our Privelege and the Privilege of Our Power. He cited the efforts of James Baldwin in the 1960s and 1970s and the Black Lives Matter movement of today as important forces in “confronting power, privilege, and ignorance.” By privilege, Mr. Walker speaks of unearned advantages or preferential treatment one group holds over another. And ignorance, he says, is such a ferocious enemy because of its conspiratorial silence. As an African American gay man, Mr. Walker pledged his organization would focus on combating inequality. At that time, leading disability advocates took Mr. Walker to task for overlooking a major constituency: people with disabilities. In this open letter, he acknowledges his error of omission with candor and has pledged to rectify it. In his powerful and honest letter, he cites specific instances in which people of disabilities have faced all kinds of discrimination; in this context, he pledges to move “from ignorance to enlightenment.”
Carol Glazer, of the National Institute on Disability, was one of the first disability advocates to speak out in praise of Mr. Walker, in her blog post, “Ford Foundation’s Remarkable Mea Culpa Will Provide Greater Opportunities for People with Disabilities.” The piece was published by Huffpost Business. Mr. Walker, she says, has shown a profound leadership that should guide other philanthropic organizations.
Dr. Catherine Kudlick, of the Paul K. Longmore Institute on Disability, an important academic advocacy organization, acknowledged this important development but added that while it is an important start, more needs to be done. She has three suggestions, which we quote:
- Know that the best way to help people with disabilities is to find ways for disabled people to help you. That means, says Dr. Kudlick, embracing the philosophy of “Nothing about us without us!”
- Ask what it means to cure disability. While alleviating physical or emotional suffering is important, says Dr. Kudlick, all too often the talk of a cure entails – even unintentionally – denying the disability rather than changing people’s attitudes. Moreover, she says, it does not have to be an either/or.
- Learn our history. Doing so offers critical insight into important issues, such as discrimination.
Having said that, Dr. Kudlick is very pleased and optimistic about this development. As an advocacy organization, so is the Advancing Opportunities team.