Invisible Disabilities

Alan Rasof Invisible DisabilitiesEvery so often, an article circulates about some horrible citizen who parked in a handicap spot and exhibited no need to. Often accompanied by secret smartphone footage and quiet snide commentary, the outrage usually emerges because there is no visible evidence that someone is suffering from a disability. As it turns out, though, there are countless invisible disabilities that could render an otherwise simple trip to the grocery store excruciatingly difficult or painful.

Invisible disabilities include those that impair the individual from navigating life as comfortably as those with fully-functional bodies, but whose handicaps may not be as obvious. Take, for example, someone with severe hearing loss. Or someone with “burning syndrome,” a nervous disorder that renders the person extremely sensitive to any touch so much so that their skin feels on fire all the time. Those people still need a little extra help as they traverse the world, but a passerby would have no idea.

For a long time, invisible disabilities were treated as either totally hallucinated or as miracles from God. For long stretches of human history, women could be diagnosed with “hysteria,” when in fact they were dealing with something that today we would call depression, anxiety, or PTSD. Many who suffered from what we call epilepsy were thought to be prophets — the “dreams” they had were trademarks of the cognitive disorders associated with epileptic episodes, and some even think that Joan of Arc herself suffered from epilepsy.

One woman in Boston recently wrote about her difficulty riding the train to and from locations because of an autoimmune disease that eats away at her tendons, making mobility difficult and terribly painful. For some time, it was awkward for her to ask strangers to cough up their seats for someone who appears to be perfectly healthy, but then she began using a cane and slowly mustering the courage to verbally ask people if she could sit in their chair.

Today, though, we have a much better understanding of the physical and cognitive disabilities that may not be as obvious as missing legs or speech impediment. Our ability to accommodate such people, however, is still in the works.  
Towards the end of last year, England rolled out a program for their public transport in which some passengers wore small blue campaign pins that read, “Please Offer Me a Seat.” London offered these free buttons to 1000 riders with invisibilities so that they didn’t have to feel so awkward asking for a seat on the subways. After a few months, the city counted the experiment a total success, with more than three quarters of the button-donning passengers reporting that their riding experience had indeed improved.

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Concert Going with Disabilities

Alan Rasof Concert Going with DisabilitiesFor lots of excited fans, summertime means music festivals and concerts with their favorite artists. This usually entails a good amount of wandering about a venue for food, singing along with the best songs, and more. Individuals with disabilities, believe it or not, also enjoy going to shows and concerts, but often their experience is a little different from attendees who are able-bodied.

Depending on the mobility of the individual, physically getting to the location and finding a seat can be a challenge in and of itself. Often, concert goers who use a wheelchair or power chair to navigate have to jump through lots of hoops to ensure that their seats are wheelchair accessible. Few if any ticket sale websites can “check” to ensure that the person purchasing a wheelchair accessible seat actually needs the accessibility.

Additionally, ticket sales websites like TicketFly and Ticketmaster may not communicate with the actual concert venue with any frequency, so for people in need of accessible seating, finding the right person can be a nightmare. One unfortunate soul spent a month being bounced from the ticket sales company to the venue and back and forth again before finally procuring accessible seating her her and her boyfriend with cerebral palsy.

Other disabilities can impact the concert going experience, too. Recently, one woman’s video went viral on social media after a concert goer recorded her translating an entire Snoop Dogg concert into sign language in front of a large crowd of fans. Those who are hard of hearing or live with significant hearing loss still enjoy the experience of attending concerts and seeing their favorite performers live among others who admire the artist. However, for them to fully enjoy the experience, some need friends or professionals to translate the performance into sign language for them to understand.

Holly Maniatty has been signing rap shows and festivals for sixteen years and has translated the work of such artists as Jay-Z, Eminem, and the Wu Tang Clan. Professionally, Maniatty is an independent contractor hired by the disability department of a festival or concert. To prepare, Maniatty and her team spend weeks studying the lyrics and meter of the songs so that they can sign not only the literal translations to the dense lyrics, but also provide the appropriate body language to accompany them.

People with disabilities have favorite artists just like able-bodied people and enjoy being in the company of others who enjoy the performers. Although their experience is a little different, they love the rush of the crowd and the acceptance they find in music.

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Cerebral Palsy at Prom

Alan Rasof CP PromsIt’s prom season for high schools across the United States. Pictures of teens in elegant ball gowns and expensive tuxedos posing with flowers and limousines are flooding news websites and social media streams. Sprinkled among the smiles and sequins, though, is the occasional story about the selfless teens who benevolently decided to take a student with a disability as their prom date.

It’s been a long time since I’ve had to worry about prom, but my grandson Elijah is a toddler now and prom is still in his future. As glad as I am to see so many able-bodied teens taking teens with disabilities to prom, I don’t want this to be newsworthy. Teens with disabilities aren’t novelties, and befriending one shouldn’t be novel and newsworthy.

People with disabilities don’t exist for the rest of us to feel inspired. In a poignant TED talk, Stella Young, a journalist who uses a power chair for mobility, told the audience that she doesn’t need anyone’s help or sympathy, and she certainly doesn’t want to be held up as a model citizen for able-bodied people to think to themselves, “wow, if she can do what she does, so can I.”

Students with Cerebral Palsy especially don’t want to be looked on pitifully or as pets. Many are active members of their communities, participating in events and making friends as their conditions allow. Several people with CP have taken to blogging and vlogging to normalize and humanize their disabilities but also illuminate how difficult it is to navigate a world designed for able-bodied individuals.
As Elijah grows up, I don’t want one of his classmates to take him to prom out of pity or as a grand gesture of selflessness and altruism. Elijah has a wonderful personality. He loves to play and laugh and interact with people. When he grows up, I want someone to take him to prom because they’re friends, not because it’s a kind gesture. I’m sure he’ll be giddy to pick out flowers and bowties, and I can already picture his face lighting up when the DJ plays his favorite song. I don’t ever want to see him as a prop or the object of charity, especially at his prom.

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Accessibility Benefits Everyone

Accessibility Benefits Everyone

Wheelchair_ramp_sign_

Walking up one small flight of stairs to access the entrance of a restaurant or walking down a flight of stairs to get to the subway are everyday tasks many people never question. For handicapable individuals, these simple actions are more commonly impossible. A majority of transportation, restaurants, and shops still have not adapted their entrances to suit the needs of those in wheelchairs and those using walkers or crutches. Making changes allowing everyone accesses to a certain location actually ends up benefitting society as a whole.

 

When the weather becomes harsh, sidewalks and storefronts with stairs become hazardous for all. This being said, during a snowstorm, stairs become a burden as they must all be shoveled individually whereas ramps provide an easy shape for clearing the snow. Though sidewalks commonly have breaks in them when approaching a crosswalk, they are rarely maintained. The small “lip” between the macadam and sidewalk pose challenging for those in wheelchairs, but even walking pedestrians area at risk to stumble over the irregular pattern. These small changes in busy streets can make all of the difference wheelchairs, but also lessens the risk for individuals to catch their feet and trip over the uneven surface.

 

An inability to access certain locations can pose not only challenging but life-threatening to those using a wheelchair for means of transportation. Independence is something all those with a physical handicap continuously strive for, but in order for them to achieve that, society needs to become more conscious of their efforts. Sure, strides have been taken to better accommodate those needing accessibility, but not nearly enough to break down the barrier that exists.

 

A man diagnosed with Cerebral Palsy recently conducted and filmed a social experiment, a truly eye-opening experience about the lack of accessibility that exists in this world. The man, Zach Anner, created a humorous scenario, out of a situation that was actually more tragic than anything. Zach simply wanted to visit a famous bagel shop in Brooklyn, NY and as seen in the video, a round-trip that was only supposed to take 56 minutes, took Zach over 5 hours to accomplish. Due to being in a motorized wheelchair, he faced limitations in regards to which subway trains he could access, which streets he could maneuver around, and even when he finally reached his destination, access into the bagel shop.

 

Zach’s journey opens a dialogue about accessibility not only for those who influence how cities are adapted but even for small business owners. This small bagel shop in Brooklyn is a huge tourist attraction, yet they had to send an employee outside to take Zach’s order, due to their storefront only having one large step to enter the front door and no ramp. Businesses who lack accessibility are losing customers when there is absolutely no reason they should. In Israel, a woman is fighting for more accessibility, with that same, simple mentality. An area with a large tourist income truly loses profits when they don’t provide enough handicap-friendly options. There are thousands of destinations, such as Israel, with rough terrain and vast amounts of stairs, making the adventure for those in wheelchairs nearly impossible.

Disney World has accomplished a great deal in making their parks accessible for all. On the theme park’s website, a huge list of FAQs and answers are listed in regards to accessibility. Seen here, is a list of just a few of the accommodations they have made in regards to various disabilities. Every bus that travels around the parks and hotels are wheelchair accessible, special filters on their website show you what hotels have accessible rooms, and there are ways to either bring a personal wheelchair or rent one from the park! Most sections of the park do not require stairs, and those that do, always have a ramp nearby. Take notes, rest of the world!

 

As our society continues to adapt and become more tolerant to everyone, it is important to keep in mind those needing additional accessibility, and when a set of stairs just won’t cut it. People with mobility restraints are not new to our society, and it is time proper accommodations are made for them. These changes will not only benefit those with restraints, but overall will add value to everyone from business owners, too clumsy people walking down the street.

 

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The Fight for Service Animals

Alan Rasof | The Fight for Service AnimalsIt’s been a long uphill battle for people with disabilities to earn the rights to take their service dogs with them into classes, jobs, and recreational spaces like restaurants, but the movement scored a big win a few weeks ago when the Supreme Court ruled in favor of Elhena Fry and her service dog, Wonder.

The case, Fry v. Napoleon, centered around the state of Michigan’s obligations to supply a Free Appropriate Public Education (FAPE) that complied with the Individuals with Disabilities Education Act (IDEA). The school in Michigan argued that Elhena, who suffers from severe cerebral palsy, could not bring her service dog Wonder into her school because a human aid could provide all the attention and extra help she needed, as per her Individualized Education Plan (IEP). Elhena Fry’s family felt that the person who was aiding her was not, in fact, providing enough support to fulfill the obligations of the school set forth by the IDEA and consulted the ACLU for further action. The family sued the school and the principal for emotional damages for monetary compensation.

In an 8-0 majority with Thomas and Alito writing concurrences, the Supreme Court ruled in favor of the Fry family. As written on SCOTUSblog, “Exhaustion of the administrative procedures established by the Individuals with Disabilities Education Act is unnecessary when the gravamen of the plaintiff’s suit is something other than the denial of the IDEA’s core guarantee of a “free appropriate public education.’”

This is a huge victory for people with disabilities who use service animals for improved mobility. FAPE cases continue to make their way to the Supreme Court as education budgets shrivel, specifically for students with disabilities, but cases like Elhena’s ensure that the most vulnerable students have access to the best public education experience possible. With Wonder by her side, Elhena can make friends more easily, visit the bathroom on her own, and navigate the physical terrain of the school building.

The public has rallied around the cause, praising and supporting people with disabilities across social media. In December, Lowes made headlines by hiring a US Air Force Veteran and his service dog to work in their store. After his discharge, Clay Luthy started looking for a job that would be amenable to his sidekick, Charlotte, a yellow lab he’s had since she was a puppy. Lowes publically stated that Luthy was the best man for the job, and bringing his dog on board was a no-brainer.

The cause for service animals, however, is being hurt by those who take advantage of “service animal” loopholes for the sake of keeping personal pets. Most landlords who don’t allow for pets make exceptions for service animals to be more accommodating for people with disabilities. The easiest way people hide under the protection of service animals is by claiming their pets are “emotional support” animals. While it’s uncontested that animals are excellent companions for individuals suffering from depression, bipolar disorder, loss, etc., there is no legal classification for a “comfort animal,” whereas there are a lot of legal rights for animals that provide a service to those with severe physical limitations like blindness or neuromuscular problems.

Going forward, we need to encourage more protection for people who rely on service animals for independence and mobility. Service animals provide people with handicaps a freer, more “normal” life than they might otherwise have.

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Food: an Escape from Disability

foodFor many young people living with Cerebral Palsy, a distant goal is independence. As we all know, CP varies in severity and expression depending on the severity of the brain damage that the individual sustained. For some, their minds are perfectly in tact but their nervous systems and muscles suffer from abnormalities of form and function. For others, though, the condition can leave them nearly incapable of ever living life independently.

One common path to independence, though? Food. For many who live with CP, the food industry provides a welcome road to a more independent lifestyle, complete with repetitive tasks, support from business owners, interactions with customers, and wages. Some large-scale operations like Whole Foods and Giant have already made commitments to hiring more individuals with disabilities and providing them with the attention and training they need to be successful. In Pennsylvania, Leg Up Farmers Market trains and employs adults with disabilities and walks them through the entire process, from farming the food to marketing and selling it to customers.

On a smaller scale, though, small businesses have a greater ability to provide those with disabilities a personalized working experience that is mutually beneficial. Whereas larger stores and restaurants entertain more customers and thus may not have time to nurture an employee with special needs, small stores, local cafes, and other good-hearted small business owners can employ individuals who may need some extra time and attention.

Take, for example, Victoria Reedy of Schenectady, N.Y. NPR recently ran a story about a young woman who lives with Panhypopituitarism, a disease that drastically limits growth hormone production and can also cause some other physical, mental, and cognitive inhibitions. Reedy struggled in school with both the content and the motor skills required to perform, but as a 26-year-old woman, she’s found new life working in Puzzles Bakery & Cafe, where she participates in the food service work and enjoys some tasks like washing dishes and

In another example, one young man with CP turned his dietary restrictions into a platform for his passion as a food critic. Alex Jenkins of Charlotte, North Carolina, lives with Cerebral Palsy, and as a result, has some pretty intense dietary restrictions. In addition, Alex experiences some limited mobility and reduced fine motor skills, so he often asks his waiters to cut his food for him. Writing under the pseudonym The Dude, Alex pens reviews of the restaurants that includes discussions of their accessibility to individuals with handicaps and their ability to accommodate him. With his mother and his caregiver, Alex regularly visits restaurants, and afterwards, he and his mother draft and post reviews on his blog, Food with the Dude. In this way, Alex has harnessed his disability into a positive, informative outlet.
For many with disabilities, food is an open door to freedom and mobility. It’s a common ground, a learning space, and a way for these individuals to earn a small income.

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Representation of Cerebral Palsy in Media

RepresentationAs of late, the importance of representation in the media has been a popular rallying cry for minorities of all types. Women call on the Bechdel test to determine the level of female representation in movies and TV shows. Last year, the hashtag #OscarsSoWhite drew attention to the dearth of people of color eligible to win the prestigious acting award.

Calling for better minority representation has also extended to those with disabilities. TV shows like Degrassi and Glee have depicted young people with physical handicaps who participate in everyday life with friends who care about them, include them, and are sensitive to their limitations. Arab comedian Maysoon Zayid has performed all over the globe doing stand-up related to her life with cerebral palsy. In her TED talk, she described how she auditioned for the role of a person with cerebral palsy but was turned down in favor of an able-bodied actor. When she asked why she wasn’t chosen, the casting director told her they were worried she wouldn’t be able to perform some of the actions for which the script called. This baffled her — if she, a woman with cerebral palsy, couldn’t perform the actions of the script, maybe the script didn’t accurately portray life with cerebral palsy.

Some children’s authors and illustrators have decided to take the battle for representation upon themselves and pen books about children with special needs and disabilities to help young people learn the facts about handicaps and normalize the idea of having friends and peers who look and behave differently. Especially for cerebral palsy, which can vary in severity and symptoms, representation in children’s literature can help able-bodied children recognize and normalize the appearance of the disability in their fellow classmates.

Shaila Abdullah wrote a book in 2014 called My Friend Suhana: A Story of Friendship and Cerebral Palsy to help children understand how to be a good friend to someone living with CP. In the book, an able-bodied narrator Aanyah shows how she loves and cares for her nonverbal best friend Suhana, who lives with CP, and how Suhana has just as many abilities as disabilities. The author and her 10-year-old daughter (on whom the narrator is based) volunteer weekly at a center for children with special needs, so the two of them wanted to demonstrate in a book that love and friendship transcends disability. This heartwarming books is a must-read for any child to help foster compassion and understanding.

Aaron Philip also wrote an autobiographical story called This Kid Can Fly: It’s about Ability (NOT Disability about his own life with Cerebral Palsy. A 14-year-old African American native of the Bronx, Aaron is a disability activist and advocate for helping the general public understand the reality of living with CP and how to help others with the condition. His memoir, written with the help of Tonya Bolden, delineates his life story and how he has embraced his different life.

By including books with a healthy representation of children with disabilities in schools, libraries, and homes, we can help normalize CP and make children more open and compassionate.  

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Talking about disability to able-bodied children

A huge part of creating an inclusive, supporting environment for children with disabilities is making sure their peers are in the know about how disability works. You may initially feel uncomfortable talking with a young child about a classmate in a wheelchair or a classmate with learning differences, but creating a world more receptive to people with differences starts with young people. Rather than teaching a child to ignore a person with a disability, or worse yet, treat a person with a disability condescendingly, here are some ways you can talk about disability in a way that encourages interaction and acceptance.

Firstly, address the difference. Children are naturally curious and may stare, gawk, or point at peers who have obvious physical differences, so use the opportunity to educate on disability, not bury the topic. When children are taught to “ignore” disability, they neglect the importance of inclusion, so teach them to embrace differences, ask questions, and engage with people who are different.

Talk straight with your child. Use names for devices and briefly sum up their purpose. For example, if your child is curious about a person with an oxygen tank, explain plainly and without emotion or speculation that the person may need some extra help breathing, so they use the tank to help. Using appropriate and respectful words to describe disability will instill respect in your child. Instead of words like “crippled,” “retarded,” or “deformed,” you can use words like “different,” “disabled,” or cognitively/intellectually disabled,” to ensure acceptance rather than condescension.

Point out similarities. Rather than dwelling on how children with disabilities are different from able-bodied children, talk about the ways all children are similar. Children like to have friends, play games, form opinions, pet puppies, watch movies, and other common activities. Spending time on similarities will reinforce inclusion, acceptance, and empathy with your child.

Immediately discourage bullying or jokes. A child may naturally want to tease or prey on another child’s difference or disability, as children with disabilities are commonly considered “easy targets” for verbal abuse. Demonstrate to your child that it would be hurtful if someone teased them for something uncontrollable, such as their hair color or name, so it’s not nice to do the same to another child. Your main thesis when discussing disability with your child should be that, no matter a child’s condition, they’re still a person who deserves respect and acceptance.

Taking the time to teach and model respect towards people with disabilities will help develop the same attributes in children, reduce bullying, and create an inclusive culture that benefits both able-bodied people and those with disabilities.

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Common Forms of Cerebral Palsy

Common Forms of Cerebral Palsy

Cerebral Palsy is an umbrella term covering a group of non-progressive and non-contagious motor conditions that cause physical disability in human development, mostly in the various area of body movement. Signs and symptoms of cerebral palsy usually show in the first year of life, sometimes even before birth.

The medical community has identified 3 types of cerebral palsy (however some people may have symptoms associated with different types, a condition known as mixed cerebral palsy.)

Spastic Cerebral Palsy

Spastic cerebral palsy causes great tension in the muscles. Normally, muscle groups work in pairs. When one pair tightens, the opposite pair relaxes. Interruptions in messages between the brain, nerves and muscles cause difficulty with movements.

Ataxic Cerebral Palsy

Children with ataxic cerebral palsy usually walk with their feet far apart. They find it hard to move quickly or precisely. They have trouble writing or buttoning their clothes. Ataxic cerebral palsy also causes something called intention tremor. If a child with this symptom reaches for a book, his hand and arm start to quiver. The movement grows worse as he gets closer to the shelf.

Athetoid Cerebral Palsy

Children with athetoid cerebral palsy have problems controlling the movement of their hands, arms, feet and legs. It can be hard to sit or walk. Their movements may be slow and writhing or rapid and jerky. If the face and tongue are affected, the person has a hard time sucking, swallowing and talking. Muscle tone can change from too tight to too loose.

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