Cerebral Palsy and Bad Teachers

Any parent of a child with a disability will tell you that teachers are either saving graces without whom nothing would be possible, or a parent’s worst nightmare who fails to adapt to the needs of teaching a child who is differently abled.

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A few weeks ago, a particular case went viral. Rosa Johnson is a student with severe cerebral palsy that leaves her little control of her body. Rosa’s mother Doreen had sent her to a school for students with special needs near their home in Ann Arbor, MI, where Doreen believed her daughter would be getting the best care available. However, in early November 2017, Doreen received a message from her daughter’s teacher that read “She won’t be quiet!!!!” accompanied by an image of Rosa’s mouth taped shut with blue painter’s tape. Doreen immediately looked for legal counsel and soon learned that Rosa had also been subject to other instances of abuse and neglect, including having been locked in a closet and having been slapped by a school bus driver.

As far as the US has come in our care of the physically and cognitively disabled, there are still lots of areas for improvement, and some cases continue to fall through the cracks. Lucky, the advent of the smartphone has made it easier for classmates and other adults to capture evidence of abuse, but that in and of itself won’t fix the problem. In the event that you or a loved one finds yourself in a situation where you have to investigate the way an adult or superior is treating a subordinate or student with special needs inappropriately, there are a couple of best practices you can follow.

Firstly, as Doreen did, immediately seek legal counsel. For a case as egregious as Doreen and Rosa’s, lawyers are likely to take it on pro-bono and help you find restorative justice and ensure that all liable parties are held accountable for their actions and missteps.

You can also start to collect “evidence” that may prove useful in establishing a pattern of abuse and neglect. Anyone who has spent time watching Law and Order will well know the importance of having documentation, pictures, doctors’ reports, etc., that provide concrete proof that something was amiss in the school. As tedious and uncomfortable as it may be, go back through your emails, texts, smartphone pictures, and conversations with friends.

Even if you can’t win in state or federal court, you can often win in the court of public opinion. With the blessing of your legal counsel, you can write about what happened and publish it on social media, on your blog, or try to get your story to run in a newspaper or magazine. Perhaps others will come forward with similar stories and you can spare another family the heartache and trouble that you’ve had to endure. 

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.

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.

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.

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.

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.  

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.

Sports Illustrated Honors Teen Who Led Cerebral Palsy Walks

In my last blog post, I wrote about the inspiring and heart-warming story of Hunter Gandee, a teen hero who has brought tons of attention and awareness to Cerebral Palsy, a disease that affects his younger brother, Braden Grandee.

On Monday, Sports Illustrated announced its annual list of accolades. Earning the first High School Athlete of the Year award was the 15-year-old high school sophomore, Hunter Gandee.

“What an honor! I’m truly blessed!” Hunter tweeted Monday afternoon.

Hunter was 14 and Braden was 7 when the brothers first walked 40 miles together to raise money for a handicap-accessible playground at Braden’s elementary school, as well as increased understanding of cerebral palsy — a brain injury that affects movement, posture and muscle coordination.

Throughout the entire June 2014 walk, Hunter carried his brother on his back. One year later, the duo was back at it — this time walking 57 miles. The second “Cerebral Palsy Swagger” event was a step up challenge-wise, but the goal was the same.

“One thing I wanted to show through this walk is the power of the youth in our society,” Hunter says. “We saw a problem, we had an idea to create a solution, and the only difference from us and a lot of other kids is that we went out and tried it.”

Since completing the walks, the brothers have received attention from national media organizations, hoping to share their story. Hunter has received countless awards for his strength and determination, including most recently the Sports Illustrated accolade.

Hunter’s story will be featured in the Sports Illustrated magazine issue that hits the stands Dec. 21. He has also been invited to an awards dinner in New York to honor the athletes featured in the magazine, including cover athlete and tennis legend Serena Williams.

Here is a 10 minute video I found that shows the beautiful relationship between these two brothers. Enjoy:

 

Community Rallies Together To Build Accessible Playground For A Student With Cerebral Palsy

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Douglas Road Elementary in Bedford township has a brand new playground, inspired by Braden Gandee, 9, who has Cerebral Palsy.

NBC News first introduced the Gandee brothers’ story in June 2014 when the pair set off — with Hunter carrying Braden on his back — from their home in Temperance, Michigan, and walked forty miles to the University of Michigan’s Ann Arbor campus to raise awareness about cerebral palsy. Along the journey, people cheered them on.

The story of Braden and his brother Hunter made national news with what they called the “CP Swagger.”

All that attention brought generous donations from individuals across the country, including from teams of engineers who offered to build a new playground for the community, accessible to people suffering from disabilities.

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Braden Gandee always had a simple dream: to play at recess alongside his classmates.

“I just had to sit back and watch them [friends] have fun,” said Braden “I really wanted to do what they did.”

With the help of dozens of volunteers, including his big brother, Braden and all his classmates can now play together.

“Before at recess, Braden was only able to do a few things: ride his power chair around the blacktop or use his walker,” Hunter Gandee, Braden’s brother said. “He had one handicap accessible swing.”

But now the possibilities seem endless.

“It’s just a good feeling,” Braden said. “Now I can go out and play with my friends.”

Kids with all different abilities can set sail on the new pirate themed, inclusive playground set.

“What’s really cool about it, is that Braden is going to be able to play with his friends,” Hunter told NBC. “It’s got special equipment he can use with his friends and he’s going to have so much fun.”

“3 weeks ago it was a dirt pile and an empty field,” Donnie Stevens, the president of the Parent Teacher Association at Douglas Road Elementary said.

The playground idea started some 18 months ago. The PTA spearheaded the fundraising after being inspired by the Gandee’s.

“The moment it became reality is when you see Hunter walking with Braden down that long hallway,” Stevens said.

He says the community really rallied around the effort, donating time and money to make it all possible.

“Piece by piece we got to where we’re at now,” he said.

The Gandee’s hope this will encourage other school districts and neighborhoods and most importantly educate people about Cerebral Palsy.

Watch this video to learn more about this inspiring story:

To read more about this story, click here

 

High School Students Use Their Engineering Club To Help A Fellow Classmate With Cerebral Palsy

A group of high school students in Green Township, Ohio, created a project for themselves that would help a fellow classmate, Jerry Potavin. Jerry is a student living with cerebral palsy.

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Members of the Oak Hills engineering club designed and built a table to help classmate Jerry Potavin.

What started out as just another project for the engineering team at Oak Hills High School turned out to be much more then that for classmate, Jerry Potavin. Jerry is sitting easier now thanks to the selflessness of his peers at Oak Hills.

“I have always loved helping people, it’s just what I like to do,” says Oak Hills, senior, Dylan Noble. Dylan along with 5 other engineering students were contacted by their high schools engineering teacher to build something that would make Jerry a little more comfortable. “Once we finally delivered it to him, it was exactly what they wanted” says Dylan.

Alan RasofJerry has to spend a lot of time in his wheelchair every day and because of this he needs to spend a certain amount of time a day stretched out on a flat mat. Dylan and the engineering club built a table that would make it easier for Jerry to move around.

Laura Velasquez, one of Jerry’s teachers at Oak Hills said that when they brought the table down to show Jerry, their faces were lit up with joy and excitement. Their faces were just glowing, you could feel the overwhelming positive energy that they had, said Velasquez.

Velasquez said that the table has already made a difference for Jerry. “It makes him feel a lot more included, so that’s really wonderful,” she said.

Dylan Noble, along with the rest of his engineering team, have set such a great example for their peers. They have found a way to combine the skill sets that they have learned in engineering class with giving back to their community to most importantly, help a friend.

To read more about Jerry and his classmates, or to watch a video on this story, click here.