Disability Rights: A Civic Issues

Though the US has laws that explicitly protect individuals with disabilities against discrimination and provides welfare and education opportunities, many countries around the world do not. In the Netherlands, 91% of people believe that their country is “a good place” for those with intellectual disabilities. In the US, it’s 82%. While these statistics show a general appreciation for the rights of the intellectually disabled community, not every country does so well. In Yemen, just 24% of people believed that their country was a good place. So, how are disability rights different between the Netherlands and Yemen, and how does the quality of life for people in low ranking countries look?

This past summer I traveled to Kenya to work in an integrated school called Tania. In Kenya, 55% of people believe the country is a good place for those with disabilities, and while the majority of people believe this, I was shocked to witness the differences in the special education system. In the classroom I worked in, the teacher sat behind her desk (beading a bracelet), while her students were left unengaged, moaning, and rocking back and forth. Kids sat in a puddle of their own pee as flies landed on their lips. On the other side, the students without disabilities were extremely supportive of their peers and helped them to do chores and made sure that they got their meals first. What was most shocking was that Tania is one of the best (and only) special education programs in Kenya. It’s difficult for me to wrap my head around the majority of people believing that this was a good environment for people with disabilities to live in.

With Kenya already looking so different from the US, I can only imagine what it’s like in Yemen. Since many people in Yemen are affected by poverty and violence, the number of people with disabilities is high. While the government has passed laws that protect people with disabilities, they are not enforced. Some families even keep their children with disabilities locked in their homes, afraid of the social stigma that comes with disability. Individuals with disabilities can be denied access to education, employment, healthcare, and accessibility. Most people in Yemen are Muslim, which puts an emphasis on caring for people with disabilities. Because of this fundamental belief, some people with disabilities receive services. Outside of the government, there are several NGOs that provide services for people with intellectual disabilities. There is the Yemen Center for Autism and Handicap International.

Intersectionality is the idea that identities overlap and that one identity cannot be fully talked about or understood without addressing other identities. Intersectionality hopes to expand the first wave of feminism which mostly focused on white, middle to upper-class women. Many people of color and those with low socioeconomic status were left out of the movement and thought to be “too difficult” to advocate for. Today, by addressing intersectionality, civil rights activists are hoping to include all people.

While intersectionality is a powerful movement that is making many people feel included and progressing the civil rights movement, people with intellectual and developmental disabilities are still being left out of the piece. I know I was taught about racism, sexism, homophobia, transphobia, and xenophobia since I was in elementary school; but, it wasn’t until I was in high school when I first heard the term “ableism.”   Ableism is the term used to describe the discrimination that people with both physical and intellectual and developmental disabilities face. Even the Google generated definition for intersectionality (“the interconnected nature of social categorizations such as race, class, and gender as they apply to a given individual or group”) leaves out the disabled.

While lawmakers and employers have made large strides in seeing people of color and the LGBT community as equals, people with disabilities are still seen as less of a human being and less valuable to society.  When it comes to intersectionality today, there is still an underlying tone that people with disabilities are “too difficult” to advocate for. Few people include or even remember to think about the disability community when they talk about civil rights, and even when they are brought into the conversation, they are often talked for. Without getting to hear directly from the community, there is a gap in the needs of these people.

While the #MeToo movement circulated the globe and addressed crucial women’s issues and rights, many people with disabilities felt excluded. While the disability community faces many of the same prejudices as women and gender non-conforming people, and face extremely high rates of sexual abuse and harassment, their voices were rarely heard or recognized in the movement. In the intellectual and developmental disability community, sexual assault happens at 7x the rate of neurotypicals. When I worked in a special education class at my high school, we were constantly having explicit conversations about consent, and rehashing points about control over your body and how to report when something bad happens.

Not only does the disability community feel left out from the feminist movement, but also from race and gender identity conversations. When one of my friends with a developmental disability started talking about how they were unsure of their gender identity and felt like they may want to transition, many people belittled them and assumed that they weren’t fully capable of understanding their identity.

While intersectionality is a crucial step towards full civil rights for everyone, we need to make sure that people with disabilities are being included and that they get to share their voice.

With social distancing and my mind on the coronavirus, I’ve started to wonder how the disability community is being affected by this global crisis. An already vulnerable population, people with intellectual and developmental disabilities could be one of the hardest-hit groups. The unemployment rate of people with disabilities is incredibly high, and with the economy crashing, it will likely get worse. Often, the jobs that people with disabilities work are hourly and seen as expendable in the eyes of corporations. Not only will jobs be affected, but also health. Many people with intellectual and developmental disabilities also face medical conditions that put them at a higher risk for contracting coronavirus or they may struggle to access medical appointments because of the overpopulation in hospitals currently.

I haven’t been the only person curious about how this population will be affected. Forbes points out how many people with intellectual and developmental disabilities rely on services to live independently. Instead of living in a group living area, they may opt to live on their own but need people to check in with them, drop off essential items like food, that they’re appropriately managing their finances, and make sure that they are staying healthy. This option grants people with disabilities the opportunity to live a productive life in which they maintain control over their own lives. However, with social distancing and services like this being low priority, individuals with disabilities may struggle with their independent living option or have to move into a group home.

Forbes also mentions that there may be some positive aspects for the disability community. With people all over the world starting to work from home, jobs are being forced to accommodate their workers and make sure that their content is accessible. Since many people with disabilities prefer or have to work from home, employers may be more willing to empathize with these individuals and understand what they need for success.

The ARC (a community that provides services and connections for people with intellectual and developmental disabilities) points out that the new emergency relief bill. By providing money to families, the government may be preventing a crisis from the likely skyrocketing rates of unemployment in the disability community. Additionally, the bill will support families to take off work to care for relatives with disabilities, as their primary caretakers may not be able to continue working with their clients.

While it is certainly a scary time right now, I am glad that the government is stepping up to take care of more vulnerable populations and acknowledging some of their needs. Hopefully, Congress will continue to aid the disability community and make sure that they are hearing them and what they need is in time.

LifeLink PSU is a special education program that supports students with disabilities in the State College Area School District (SCASD). The program is for students aged 18-21 and offers an opportunity to take classes at Penn State, learn social and technical skills, and focus on independence. In Pennsylvania, the maximum age that a student can be enrolled in public high school is 21, which means that many students with disabilities end up spending 8 years in the same spot, relearning similar skills and staying somewhat stagnant. By moving students out of their parents’ home and into a college environment, LifeLink offers students with disabilities a unique opportunity.

I’ve had several friends go through the LifeLink program, and all of them have high reviews. My friend Katie would talk about how excited she was to be in classes, and how she liked to get to live in an apartment without her parents. Other students I know from State High (SCASD’s high school) have used LifeLink as a transition. They’ll stay at home for 5 days a week and then go to the LifeLink apartment over the weekend. This way, they get to gradually adjust to a major life change and learn the ins and outs of college life before making a full commitment. Here’s a very relatable testimony from one of my friends, Abby: “At LifeLink I take Sign Language, Hip-Hop, Biobehavioral Health, and Women’s Studies classes. My classes are good except the ones that start at 9:05 a.m. It’s so easy to be late but my mentor and I always make it on time.”

LifeLink doesn’t accept everyone. Students have to be mature and show a desire to live in a community. It was always a great incentive for special ed teachers to use in their classrooms, as only the students who did their best and desired to grow would get into this life-changing opportunity.

Lifelink has many volunteers from the Penn State community, which is definitely something I hope to do while I’m a student here. They have 500 PSU Student Mentors which help with things from tutoring to recreational activities. Some of the disability-focused classes here require a service component, and LifeLink is a great way to help out. Volunteering schedules are very flexible and the program is always looking for new people! If you’re interested, you can call 814-865-8260 and ask about getting involved. Along with the volunteers, LifeLink also has 4 full-time learning support teachers.

LifeLink adds tremendous value to the entire Penn State community. It incorporates diversity into the classroom and provides opportunities for students with and without disabilities.

The ability to access a location or piece of information gives people power. It’s how we connect with others, learn about the world, and get opportunities. Unfortunately, for many people with disabilities, the world is inaccessible.

Of course, there are the obvious barriers such as stairs for people with wheelchairs (ie the main entrance to Boucke, despite it hosting the disability resources office), as well as many accessibility issues that able-bodied people don’t have to think about on a regular basis. This includes issues like web access, hearing, and communication.

Recently, web accessibility has been gaining more attention. Developers are taught to contrast their text so that it is legible to those with vision loss, give their images alternative text, and control time-out settings. Penn State, for example, is supposed to make any text handouts available on alternative media. This is a great initiative; however, it has some flaws. A major problem that individuals with disabilities face is timing. To get text in alternative media, they often have to request it two weeks in advance. In that amount of time, professors may re-arrange the schedule or add new text, making it near-impossible for people with disabilities to keep up. Penn State also has website pages on accessible images, keyboards, and many other web-access issues, showing that they are trying to keep campus as accessible as possible.

Another major issue that people with disabilities can face has to do with hearing and communicating. As a member of Sign Language Organization, I’ve heard many people with hearing loss and interpreters that work at PSU complain about the lack of resources for Deaf and hard of hearing students. Despite Penn State offering resources like interpreters and assistive listening devices, there is a severe shortage, and many professors don’t know how to help their students with hearing impairments. Additionally, despite advocacy from student groups, Penn State refuses to allow ASL (American Sign Language) to be counted as a language. Though this may seem trivial, many people in the Deaf and HOH community feel frustrated and disrespected by the lack of recognition for their language. With that being said, Penn State is trying to improve its accessibility for hearing impaired students. Every summer, Penn State hosts a Deaf and HOH camp for high school students, teaching them about accessibility in college, resources available to them, and fostering a community. There’s also a new club on campus called PSU Access, that is working to create a more accessible campus.

With headlines like “Vaccines cause Autism” and “People with Autism don’t Want Friends,” there are plenty of misconceptions about what it means to have autism.  In reality, autism is a complex spectrum that is not fully understood.

Autism is commonly referred to as ASD (Autism Spectrum Disorder) due to the wide variety of severity associated with it and the broad challenges Autistic people face. ASD is diagnosed under the following criteria:

• Persistent deficits in social communication and social interaction across multiple contexts.
• Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history.
• Symptoms must be present in the early developmental period.
• Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.

Though most people think of autism as an intellectual disability, it can be seen by the criteria above that it primarily manifests in social behaviors. Autistic people may struggle to make/keep friends, express their emotions, make eye contact with others, catch social cues, or communicate verbally. Because of these challenges, many Autistic people struggle to connect with others and peers may avoid them because they think that they don’t want to be connected with.

As I previously said, autism is referred to as a spectrum due to the differing severity of the manifestations. Some Autistic people can function fully in society and their behaviors may not even be noticed by the general population. Others on the spectrum may be fully nonverbal and struggle to do anything independently. In the past, there used to be a difference between those with “high functioning” and “low functioning” autism. Those with high functioning autism who may also have a unique ability in a subject (perhaps reading, math, or memory) were diagnosed with Aspergers Syndrome. These people still struggle with acts of empathy, socialization, and understanding complex cues. Though there used to be two distinct diagnoses, there has been a recent push to include Aspergers in the Autism Spectrum because the difficulties faced by both groups were greatly misunderstood and overlapped significantly.

You may have noticed that through out this post, I’ve been referring to people who have Autism as “Autistic people.” Though there has been a general push for people-first language in the disability community, many Autistic people are proud of their diagnosis and think of it as an integral part of who they are. Because of this, they want to be described as autistic because they cannot be separated from it. With that being said, others prefer “people with autism” and you should always check with that individual before assuming their prefrences.

Oftentimes, when babies are born with Down syndrome, the doctors profusely apologize to the parents, saying that they’re sorry for their loss. Parents are given dark outlooks on the future and kids are looked down upon. Despite the significant challenges that kids with down syndrome face, there are also positives and the opportunity to live a productive and fulfilling life.

Down syndrome is a genetic condition caused by a third 21st chromosome. The additional genetic material causes alterations to intellectual and physical development. Some of the common features of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a crease down the palm. People with Down syndrome may also need heart or spinal surgeries and may face hearing or vision loss.  The name Down syndrome comes from a physician, John Down, who in 1866 described the condition as a distinct entity. However, it wasn’t until 1959 when Down syndrome was identified as a chromosomal condition.

In addition to the physical challenges, there are also intellectual and developmental differences in people with Down syndrome. All people with Down syndrome will have some degree of intellectual disability; however, the disability widely ranges in severity. Early intervention is critical in catching up on development, as there are often setbacks in speech and motor abilities. Additionally, most children with Down syndrome in the US will be placed in Special Education due to the variety of support they may need. Physical, occupational, and speech therapies are all critical in supporting development. Many adults with down syndrome are able to live semi-independently in community homes and hold down stable jobs.

Most people with Down syndrome prefer person-first language, meaning that you describe them as an individual/person/child with Down syndrome, rather than Down syndrome child or Down’s kid. It’s also important to stay away from phrases like “struggles with” or “abnormal.”

The cause of the extra chromosome is unknown. Maternal age is one factor that has been linked to the condition, however, there are still many women under the age of 35 who have a child with down syndrome. The additional copy can originate from the mother or the father; however, 95% of the cases are linked with the mother. Additionally, only 1% of Down syndrome cases are hereditary, meaning that just because a parent has one baby with Down syndrome, does not mean their next will have the condition. It’s estimated that Down syndrome occurs in about 1 in every 700 babies.

 

The Oxford Dictionary defines disability as “a physical or mental condition that limits a person’s movements, senses, or activities.” or “a disadvantage or handicap, especially one imposed or recognized by the law.” Both of these definitions highlight an individual who is “limited” compared to the general person. The second definition doesn’t comment on what is causing the disadvantage, leaving people to wonder what exactly could be considered a disability. Is anyone below average in any aspect disabled? Perhaps a mom who makes less than minimum wage is disabled because she is unable to buy enough food, putting her at a disadvantage. Perhaps kids who are picked last for the soccer team are disabled because their athletic abilities and coordination aren’t excellent since they just joined soccer this year and thus they’re at a disadvantage on the field. Though both of these ideas technically fit into the second definition’s parameters, most people agree that these are not definitions. That’s where the first definition comes in. It explicitly states that there has to be a physical or mental condition.  If the mom mentioned earlier has autism and struggles to communicate with people, causing her to struggle to get and maintain a job that pays more, she fits into the first definition. If the kid was born with one leg, and thus has a physical condition that limits his ability to play soccer, he too would fit into the first definition. Most people agree that these two individuals would be legally disabled and qualify for government assistance.

Though the above definitions are more universally agreed upon, some activists argue that the mom in the first scenario should qualify for similar government assistance as the mom in the second scenario because poverty and disability relate in a vicious cycle. Poverty will often lead to preventable causes of blindness and hearing impairment due to the decreased access to medical services. Oxfam found that “100 million people living in poverty suffer from impairments acquired due to malnutrition and lack of proper sanitation.” On the flip side, individuals with a disability are more likely to be unemployed, or if employed, make significantly less money. The US Department of Labor found that “The unemployment rate for persons with a disability was 8.0 percent in 2018, more than twice the rate of those with no disability (3.7 percent).” Because of this cyclical relationship, several activists believe that the best way to decrease disabilities and improve livelihood is to give people who are struggling similar assistance to people who are legally disabled.