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.

What is Cerebral Palsy?

Definition:

Cerebral palsy, though commonly associated with impairment of motor function, is actually caused by brain damage that occurs while a child’s brain is still in its developing stages – before birth, during birth, or directly after birth. Due to this brain damage, those who are diagnosed with cerebral palsy have difficulty with body movement, muscle coordination, muscle tone, muscle control, reflex, balance, posture, and motor skill functions (fine, gross, and oral).

Alan Rasof

Cause:

Each individual’s case of cerebral palsy damage due to the amount of brain damage that occurs, the time the brain damage occurs during a certain developmental phase in the brain, and the type of brain damage that occurs. According to Cerebralpalsy.org, the type of brain damage that causes cerebral palsy can be one (or more) of the following:

  1. Prenatal disturbance of brain cell migration – genetic and environmental factors disturb brain cell migration as cells move to their appropriate location during brain development.
  2. Prenatal poor myelination (insulation) of developing nerve cell fibers – brain function is impeded when poor myelin provides an inadequate protective covering over nerve cells that aid in the transmission.
  3. Perinatal brain cell death – events in the birthing process that rupture blood vessels or starve oxygen to the brain.
  4. Postnatal non-functional or inappropriate connections (synapses) between brain cells – trauma, infections, and asphyxia that damage connections developed in the brain.

Alan Rasof Pregnant-Woman

History:

Alan Rasof amigo mgaCerebral palsy was pioneered by Dr. William John Little in the mid 1800s, who used his own childhood disability as motivation for this discovery. In addition, Sir William Osler, an important figure in modern medicine, wrote the first book pertaining to cerebral palsy to help spread awareness. He came up with the idea that the disability was a result from abnormal fetal development – far before the medical field agreed with his concept.

According to Cerebralpalsy.org, “At different times, the U.S. government passed crucial legislation to modernize care and further rights of individuals with a disability. In 1963, President John F. Kennedy signed the Community Mental Health Act, which promoted community-based care as an alternative to institutionalization,” (History of Cerebral Palsy).

Medicine has played a large role in understanding cerebral palsy, along with diagnosing it. Technological advancements in medicine have aided those who have cerebral palsy, redefining what it means to live with a disability. In addition, blood typing medicine, similar to which is used to cure jaundice, and vaccine developments such as rubella, have helped, and continue to help, to prevent the development of cerebral palsy.

In Children:

Many times, signs and symptoms of cerebral palsy are not apparent at birth, but when it comes to development and growth milestones, parents will likely notice a delay unusual from normal patterns. Today, about the amount of children with cerebral palsy ranges from about 2.3% to 3.6% out of 1,000 children.

Please stay tuned for the next blog post to find out about the preventative measures for cerebral palsy.