Making a Difference: Cerebral Palsy

Most people are unaware that Cerebral palsy (CP) is actually a term that describes a multitude of disorders, not just one. The word Cerebral refers to issues that deal with the brain, and the word Palsy refers to a person’s ability to maintain balance, posture, and movement.

The main cause of CP is predominantly due to the mother catching an infection or a virus while the fetus is still in utero. These account for 70% of the cases. Some people also attribute it to a lack of oxygen flow to the infant’s brain during labor and delivery, but that is actually a very small percentage.

A child who has CP will show signs early in childhood and they may display floppy limbs, involuntary movements, or exaggerated reflexes, to name just a few. There is no known cure at this time for CP, and most sufferers will require life-long treatment, including physical therapy, medication, and occasional surgery. For many families, these are expensive and emotionally draining times, which is why there are charities to support families who have members with cerebral palsy.

United Cerebral Palsy (UCP) is a non-profit organization that works to help families with cerebral palsy members as well as other disorders. Founded in 1949, they pioneered the idea of using fundraising telethons as a means of support. The Cerebral Palsy Foundation (CPF) is another group that not only supports people, but they do it in a different fashion by partnering with schools and the media. Reaching for the Stars is focused heavily on the science behind CP and working on ways to someday formulate a cure. 

There are also organizations that are determined to ensure adequate rights for those who suffer from disabilities. The American Association of Intellectual and Developmental Disabilities (AAIDD) was founded in 1876. Their main goals are to broaden the ability of businesses to work with individuals who have intellectual and developmental disabilities and to promote and encourage the development of a society that can fully embrace people with intellectual and developmental disabilities.

In addition to these support groups, there are numerous others that assist with the neonatal and maternal sector. March of Dimes was founded by President Franklin D. Roosevelt in 1938. The original aim was to combat polio and it was called the National Foundation for Infantile Paralysis. Since funding Jonas Salk’s life-saving polio vaccine, they have steered their focus towards preterm birth-related diseases, as well as other childhood illnesses.

Finding the Right Charity for You

There are many people who want to make a difference in the world, even if it’s in a small way. There are 1.6 million non-profit organizations in the United States at the moment, and they support causes ranging from wildlife and nature preservation to battling hunger and homelessness. For every cause you could possibly care about, there is a charity to match. The problem lies in choosing which ones are legitimate and which ones will benefit your chosen issue the most.

It is very easy in today’s world to set up a GoFundMe page or a website that purports to serve various causes. The problem with the internet is the anonymity and lack of accountability that thrives in such an unregulated environment. You might see a charity that calls itself humane league without having any actual connection to the actual animal rights advocacy group, the Humane League

There are many online databases that have done a lot of this research. They examine the financial health of the businesses and their commitment to both transparency and accountability. Some examples of these websites are guidestar.org, charitywatch.org, givewell.org, and charitynavigator.org. They do the heavy lifting when it comes to exploring tax filings and present their data in a straightforward, unbiased way.

Another great tool is word of mouth. Many people have spent years volunteering their time and donating money to various causes, rewarded by a great feeling of satisfaction that comes femur helping others. You can also look to your employer or university to see if they favor a particular cause. Chances are that they are not investing in any type of unseemly organization. 

A great way to support a charity is by volunteering. Administrative costs can add up, so searching a website like volunteermatch.org is a great way to see how your time can be of use. By typing in your location, you can see where you can be of service. The website also lets you narrow down availability based on your interests. If you have a particular skill that can be of use, there is another website called catchafire.org. This space provides a way to match your skills with organizations that would greatly appreciate the pro bono work of an expert.

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. 

Ways to Support Breast Cancer Awareness in October

Alan Rasof Breast Cancer AwarenessWays to Support Breast Cancer Awareness in October

Every year, the US and other nations commemorate those suffering from, recovering from, and living cured of breast cancer throughout the month of October. Individual people and companies will wear pink to show their support for those with the disease and to raise money for research and treatments for patients. From Yoplait to the National Football League, products and people sport pink for breast cancer awareness and fundraising. If you want to personally support the people suffering from the disease or the families of the patients, here are some ways you can get involved.

Donate directly to a local hospital: A number of exposes have criticized such organizations as Susan G. Komen for spending less than 10% of the money they raise on the patients, victims, and their families. The rest of the money gets tied up in overhead, pink products, and ad campaigns. If you want to ensure that your money goes directly to the people in need, their medications, and their families, talk with your local hospital or oncological clinic and send money to them rather than to a third-party fundraising organization. You can also browse sites like GoFundMe and donate to individuals who are raising money for treatments, travel, and reconstructive surgery.

Talk about detection: Where it’s appropriate and where you’re among trusted friends, have a conversation about self-checks and proper preventative maintenance. In the vast majority of cases, breast cancer is highly treatable when it’s caught early, but catching it early is the trick. People with breasts should be on the lookout the twelve signs of breast cancer, as outlined in this handy infographic from Know Your Lemons.12+signs+of+breast+cancer+using+lemons

Help your family live healthfully: For breast tissue in particular, there are some common practices and behaviors of Americans that directly cause breast cells to function improperly and wreak havoc on the human breast. For example, certain soaps and shampoos that include parabens, which are known to disrupt breast cell reproduction. Similarly, evolutionarily, humans didn’t produce their own hormones for a long time, so breasts are to this day very receptive to any chemical that even mimics estrogen. Unluckily for us, though, plastic is similar enough that breasts absorb plastic molecules, which are well known to cause cancer once allowed into the body. Avoid microwaving in plastic or interacting with much heated plastic, including Keurig cups.

How to Support an Abused Loved One

Domestic abuse is many people’s worst fear. But how do you help a loved one who is being abused? You might not live with them or see them often, but there are still many ways you can support them.

 

Listen to Them

Often, survivors of domestic violence go unheard. They may subtly hint that they are being abused, or that their relationship is impacting them negatively. It is never right to assume one way or another, but you can listen and ask the right questions. Directly asking “Are you being abused?” may not solicit an accurate response, so be careful with your wording. Avoid accusations, and instead focus on your loved one.

 

Give Guidance if Asked

This is a difficult step, because many victims of abuse will not admit they are being abused. However, if a friend or family member asks you for advice, offer them words of encouragement and let them know that they deserve to be treated respectfully. Again, focus less on accusing the abuser, as this may push your loved one away. Also, allow the victim to make their own decisions. Abusers often control their victims, so empowering them will give them hope.

 

Offer a Place to Stay

This may not be feasible for everyone, but if you have space for your loved one, offer to let them stay with you until they get back on their feet. Many victims suffer from financial abuse, where the abuser controls all of their money. They may not have a way to leave on their own, so offering a helping hand is a great way to show your support.

 

Share Resources

There are hundreds of resources for victims of domestic abuse, such as the National Domestic Violence Hotline. Make sure your loved one is aware of the resources available to them. Also suggest going to therapy, and offer to help find a therapist that specializes in domestic abuse. Your loved one may not be ready to talk about their trauma, so respect their decision either way. They may also be more comfortable if you accompany them to their first few sessions, and this is a suggestion you may also make.

 

Educate Yourself

Education about domestic violence is the best way to empathize with your loved one. There are plenty of resources about why victims stay with abusers and many other important topics. Reading current research from psychological professionals and stories from survivors can help broaden your knowledge. Ultimately, it is your responsibility to educate yourself about domestic abuse, not your loved one’s.

 

Love Them

This is simple. Show your love and support in as many ways as you can. Do what makes your loved one comfortable. If you’ve known them for years, you likely know some of their favorite things – the movies, foods, and activities that make them feel at home. You don’t have to spend every penny on them, but the little things can add up. Let your loved one know how much they mean to you.

 

If you suspect a loved one is being abused, you can contact the National Domestic Violence Hotline online or by phone at 1-800-799-7233.

 

Isabell Agumbah is a strong advocate against domestic violence. To find out more about domestic abuse, visit her website.

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.

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.

Accessibility Benefits Everyone

Accessibility Benefits Everyone

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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.

 

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.