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.

A Different “Quality Time”

A Different -Quality Time- Alan Rasof

When faced with the inevitable rocky patches of life, most couples are given the same time-tested advice: “Spend some quality time together.” Nothing at all is wrong with this; escaping for a nice hike in the woods or a cultural excursion can bring you closer as you are reminded of what brought you together in the first place.

But what about going against the grain? Sometimes the challenges that life throws at us are not so easily cured by your typical “quality time” movie date on the couch. Perhaps you’re going through something and your mind feels restless. What would it look like if you and your spouse actively worked against expectations of “quality” time? Instead of going on a trip that’s relaxing, what if you were to take up a challenge that’s taxing? Often times finding a distraction that you can participate in actively and together, is just the kind of cure you need to take your mind off the troubles of day to day life.

Few things can bring us together like the bonds formed during the journey towards a common goal or solution. So next time you want to spend some quality time, make the conscious decision to take the road less traveled. Sure, it may be harder, but coming out on the other side will leave the bond between you stronger than ever. Also, doing so is not something that can usually be completed in a single afternoon or a long weekend. No, these challenges weigh on you, force you to come up with creative solutions, and— most importantly— cause you to rely on your greatest love as a pillar of strength.

Maybe you need to get into shape. Try making quality time a joint exercise session, or time together in the kitchen trying out a new healthy recipe? If you’re battling certain vices, maybe your journey would include opening up to your spouse and starting a journey towards getting the help you need. And, all things permitting, if there is a problem at work that needs solving, why not get their opinion on it?

Remember, marriage is a partnership. So saddle up and help one another ride on to catch your dreams. The road may be tough, but the destination will be sweeter than that of any single vacation.

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.

Things to Know about Cerebral Palsy

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Cerebral palsy (CP) is the most common motor disability in childhood, and children with CP and their families need support.

Learn more about CP and what signs to look for in young children:

  1. Cerebral palsy (CP) is a group of disorders that affect a person’s ability to move and maintain balance and posture.
  2. CP is the most common motor disability of childhood. About 1 in 323 children have been identified with CP according to estimates from CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network.
  3. CP is more common among boys than girls, and more common among black children than among white children.
  4. Most (about 77%) children with CP have spastic CP. This means that their muscles are stiff, and as a result, their movements can be awkward.
  5. Over half (about 58%) of children with CP can walk independently.

Most CP is related to brain damage that happened before or during birth and is called congenital CP. Some of the factors that increase the risk for congenital CP are:

cerebral-palsy-11-things_a250pxEarly Signs of Cerebral Palsy

From birth to 5 years of age, a child should reach movement goals―also known as milestones―such as rolling over, sitting up, standing, and walking. A delay in reaching these movement milestones could be a sign of CP. The following are some other signs of possible CP. It is important to note that some children without CP also might have some of these signs.

In a baby 3 to 6 months of age:

  • Head falls back when picked up while lying on back
  • Feels stiff
  • Feels floppy
  • Seems to overextend back and neck when cradled in someone’s arms
  • Legs get stiff and cross or scissor when picked up


In a baby older than 6 months of age:

  • Doesn’t roll over in either direction
  • Cannot bring hands together
  • Has difficulty bringing hands to mouth
  • Reaches out with only one hand while keeping the other fisted

In a baby older than 10 months of age:

  • Crawls in a lopsided manner, pushing off with one hand and leg while dragging the opposite hand and leg
  • Scoots around on buttocks or hops on knees, but does not crawl on all fours

Resources:

http://kidshealth.org/en/parents/cerebral-palsy.html

http://www.cerebralpalsy.org/about-cerebral-palsy/

Three People With Cerebral Palsy Who Are Changing The Game

Cerebral Palsy is a neurological disorder that currently is currently affecting 764,000 people in the world today. Each year, about 8,000 to 10,000 babies and infants get diagnosed with this disorder according to cerebralpalsy.org.

Cerebral Palsy occurs as a result of a brain injury or malformation that occurs during a child’s development. The result is typically physical impairment. While many people with cerebral palsy are physically impaired, the way this symptom shows up is different for each person. There is a difference in the type of movement dysfunction, the location and number of limbs involved, and the extent to which the person is impaired from person to person.

Cerebral palsy is permanent and incurable, therefore those with cerebral palsy live with it for their entire lives. While many able-bodied people would think of this as something that stops people with cerebral palsy from doing what everyone else can, this is far from true. There pioneers are showing the world that cerebral palsy doesn’t have to stop anyone from reaching success.

  1. Bonner Paddock, the world’s first ironman with cerebral palsy

Bonner Paddock completed the 2012 Ironman Triathlon in Kona, Hawaii, making him the first person with cerebral palsy to complete the race. He was also the first person with cerebral palsy to climb Mount Kilimanjaro. Paddock was very active as a child, playing competitive soccer and baseball. His CP was mild, though he would drag his feet and often lose his balance. He was not correctly diagnosed until the age of 11.

Paddock did not talk about his disability publicly until he was 30 years old. He went on to run a number of marathons in addition to the Ironman Triathlon. He also founded the One Man, One Mission Foundation, a nonprofit that raises money to build early-learning centers for children with disabilities.

2. Maysoon Zayid, comedian and inspirational speaker

Maysoon Zayid is a comedian, writer and actress who works hard to spread the word that cerebral palsy doesn’t have to hold you back. After experiencing obstacles in the acting world due to lack of representation of people of her race and with her disability, Maysoon became a comedian and is now making millions of people laugh. She has worked with many soap opera stars as well as Adam Sandler and Dave Matthews. Maysoon also founded Maysoon’s Kids, a charity that works to help Palestinian refugee children. She is also the co-founder of the New York Arab-American Comedy Festival.

3. Ollie Nugent, UK football player

Ollie Nugent is one of the most talented players within the world of Cerebral Palsy UK football. Nugent suffered a stroke when he was born, thus leading to cerebral palsy. Despite what his parents were told to expect, Nugent walked at only 10 months. He later began kicking a ball and the rest is history. He began playing at Tranmere Rovers at the age of eight.

Nugent’s cerebral palsy affects his eyesight (mainly peripheral) and his right side. He has adapted to this over the years. After years of determination, Ollie Nugent wants to become the first player with cerebral palsy to go professional. Nugent is working hard to show the world that cerebral palsy cannot stop him from reaching his goals.

Cerebral palsy may last a lifetime, but that doesn’t mean it has to hold people back. These icons are paving the world for people who live with cerebral palsy to show them that anything is possible.

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:

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