Cassie’s Corner:

Conquering Adversity

Discrimination begins when we underestimate someone’s capabilities. Stereotypes are generalizations based on ignorance. Because there is a vast spectrum of what is considered a “disability”, a majority of the population remain ignorant to the diversity of the term “disabled”. They assume all disabilities are “global”; meaning extreme impairment in all areas, cognitive and physical.

In sports, when one’s “handicap” is mentioned, it is something that puts the player on par with the rest. Society has warped this term into a discriminatory phrase, indicating that the non-disabled person is somehow superior.

For much of the differently abled community, adversity begins at birth. Most parents that have a child with any condition out of the norm are told the worst as soon as the child is born, even before they meet them. This is where the advocacy starts.

Parents of children with disabilities need to learn very quickly what their child’s special needs are. This often comes with no guidelines as to where to get services and equipment the child may need, sometimes there is not a person around to inform the family of what types of support are available.

My parents didn’t know I was going to be born with a disability. So, as soon as I came into the world, I was rushed away without anyone being told what was going on. They left my mother on the table, alone. She didn’t know anything until after a chaplain came in to ask her if she wanted me baptized, which she was not present for. I was born at Mercy Hospital, but was taken to Children’s Hospital immediately, where my dad kept a constant vigil at my bedside. In those days, mothers had to stay in the hospital for five days after giving birth. My dad went to work right away trying to find out all the information he could about my condition. Thankfully, at Children’s Hospital, they had a clinic there for people with my disability.

Growing up, I spent a significant amount of time at Women and Children’s Hospital, back and forth to doctors, getting endless amounts of tests done and being poked, prodded, and studied from head to toe by strangers. Throughout all of this, I was simply told by the staff at the hospital to be brave and hold my breath. They never offered any sort of emotional support. So that’s what I’ve done throughout difficult situations, merely hold my breath and be brave. Doctors and other members of the medical community would all pile in a small exam room and present me as “a case” to the medical students, which is why I’m comfortable with public speaking in groups. I am used to being put on display, like an animal that does tricks, because I performed for the experts better than expected. However, I’m a lot more at ease with people in the medical community because meeting a wide variety of humanity is part of their chosen vocation. I had to advocate for my needs at an early age, not because my parents weren’t, but because the doctors weren’t listening to my complaints. I had terrible leg and back pain for years which the doctors simply ignored because it was not life threatening and I moved around really well for someone with my issues.

As a child, everyone was amazed at my capabilities. Why? I am not a superhero, I’m a regular person. It’s not a heroic feat that I get up and get dressed every day, nor is it for someone with less mobility. Like any able-bodied person, we don’t have that choice either. What does society expect me to do with my life if the accepted option for a socially normal person is to have a job, home and family by a certain age?

This acknowledgment of simple normal behavior can foster low self-esteem and anxiety for the individual, which in turn may lead to depression. If they are congratulating you for acting “normal”, are you being seen as defective the rest of the time? This also leads to a person’s needs being ignored. If you can get so far into your day without assistance, you must not need help with anything at all.

Each person’s challenges are different. Disabilities are not something that can be placed into one category, which society has tried to do. That brings me to the subject of invisible disabilities such as mental illness. Adversity can be a trigger for depression and anxiety. It can also exacerbate conditions like autism spectrum disorders, social anxiety and obsessive compulsive tendencies. Parental advocacy is key in these situations, because in the education system its so easy for a child to fall through the cracks.

In school, it was practically impossible for me to comprehend simple math concepts. I struggled with learning coin denominations, learning how to read a clock and other simple skills I was told I would need later in life. I was taken out during these math classes to a special education classroom where I would be given endless amounts of aptitude tests, and then told to do my homework. When I inevitably failed every quarter of the year, I was magically “mercy passed” in the end, and the cycle would continue the next year. I was not diagnosed with a learning disability until my third year of high school. My parents knew nothing about learning disabilities, and no one at my school bothered to suggest I may have one. I had an I.E.P., but some of my teachers refused to read it. My mom had to force them to read it so that I could get the extra help I needed.

Another issue I struggled with throughout my school career was lack of acceptance by my peers. Only a few kids acted like they were my friends, the rest mocked me or ignored me. When it came time to pair up into groups for a project, I was never chosen and was automatically placed somewhere by my teacher. Even staff at school were sometimes guilty of discrimination. At my school, they offered me what they called “adaptive gym”, which was me keeping score while the other kids played a sport. After a few months of this I decided there were better uses of my time so I told my mom I wanted to be exempt from gym. Things didn’t really improve though. I was held back from participating in a presentation once because there was light dancing involved. I was labeled antisocial by a social worker at school, nothing could be further from the truth. Those professionals “advocating” for me hindered my social development. Another way of hindering people with disabilities is lack of sex education. I know several people who received no sex education at all because their parents wanted them exempt from it. This led to me having to sit through a very awkward sex talk given by a urologist, which my friends and I were forced to sit through with our parents present at age 20.

When little effort is made by professionals in society to understand and offer support to individuals with challenges, it doesn’t help them thrive and function in society, which most of the time the disabled are not expected to do. There is a universal looking down upon those who do not contribute to society by employment without much consideration as to why those people do not have jobs. It also does not help that most organizations and state funding goes towards the severely mentally disabled and children, while higher functioning adults are left to fend for themselves. These masses are forgotten, discarded or ignored while falling through the cracks, sometimes with no support system at all. If you are lucky enough to have a mainstream education and maybe even some college, you realize the organizations set up to assist you maybe no help at all if you are not looking for a menial job.

I’ve been lucky enough to have a good support system. I’ve always had access to things I needed, thanks to my parent’s good health insurance. There are many people that have not been as fortunate. A large number of the disabled community have no choice but to have only state Medicaid and Medicare. Because of this, their quality of life may suffer because those insurances only pay the bare minimum of what is required. This can mean the difference of being able to be a part of society or being confined to your home, with the exception of medical appointments. It also does not help when the organizations set up to assist with “independent living” charge more than the current minimum wage, just to be picked up by a taxi service which also charges mileage.

Not everyone excels at math or science, or any other talent one may have. Yet when a disabled person achieves success in a field, they are celebrated as if a miracle had happened. The only miracle there is that they were given a chance to be recognized, just like anyone else, and yet they are placed on a pedestal. People with disabilities have hopes, dreams and goals just like anyone else. The only difference is that we get a pat on the back just for having them.

I once received a “courage award” in high school for just that reason. Like every other student there, I dragged my butt out of bed, got ready and went to school; and, like every other kid, my mom had to force me to go to school most days. Her support and help are the only thing that got me through that part of my life, and some people are not as lucky as I have been.

Ignorance can be a major cause of social anxiety, reclusivity, and depression. This type of social ignorance is annoying at best, and happens so often. Those affected by it mentally prepare to face “the world” by putting up emotional barricades. If every time you stepped out your door, whether it be to run errands or just escape your surroundings for a while, someone you encountered gave you a snide comment about your appearance – how you get from point A to point B, would that make you more or less likely to continue interacting with society?

I fall sometimes when walking so I use a scooter or wheelchair mostly. If I do happen to fall, everyone around runs to grab me and help me up, which only makes it harder to do so. I suppose it’s just because its socially unacceptable to allow someone with an obvious impairment to fend for themselves. (Can you feel my sarcasm?)

It’s dehumanizing for a group of people to stop and stare and attempt assistance without asking, imagine those YouTube fall compilation videos, except everyone is watching it in person. This happened to me a lot growing up, thankfully YouTube and phone cameras didn’t exist then.

As if the potential for falling in public wasn’t enough, there are the people who applaud you for leaving your own home. I can’t tell you how many times I’ve heard the words “it’s good to see you out” as if I’m some sort of unicorn. If I do go out, I try to limit my social interaction so as to avoid those types of people. I only go places where I know most of the people because I know I won’t have to deal with that exasperation.

Another example of this is the saying “you do really well with those”, referring to my crutches. I’ve used them since I started walking at age 2. I can honestly say I’ve never seen them being used improperly, except for personal defense from time to time. They aren’t that hard to figure out, and trust me I’m no rocket scientist. Assistive equipment is given only when the person has the capacity to use it. I also use a mobility scooter, and comments abound when I’m in public with it. People joke about me running them over. If you do that, there’s a 100 percent chance I’m contemplating it and 99.9 percent I might do it.

Accessibility is also still a major problem we face.  Many buildings were “grandfathered” in when the ADA was passed, which means they didn’t have to make their building accessible. If the building is accessible, this doesn’t guarantee acceptance either. If I go out alone, or with another disabled person, sometimes we aren’t noticed as requiring service from the staff at a restaurant. I’ve sat in front of the hostess desk for several minutes before being acknowledged by anyone. Sometimes if this happens, I just leave. They don’t deserve my patronage.

Housing is not much different. If you’re able enough to live independently, finding accessible housing can be very difficult. The Section 8 income-based affordable housing wait list is 10 years, and then you get to choose between living in a senior living community or a bad neighborhood. I’ve lived in a senior community, and I’ve known others that lived in bad neighborhoods. There is a third option, living 50 miles or more away from your family.

If you do decide to drive, but cannot use a regular car, you can learn with hand controls for the low price of $1500. This does not include the cost of the actual hand controls you will need to purchase, in addition to an accessible vehicle such as a van with a lift on it. Those are several hundred dollars and the vans run around $40,000, I’ve heard. VESID will pay for hand controls once, so if the car breaks or the controls break you’re out of luck.

The system is not set up to help people with disabilities thrive in their communities. Until this changes, we will continue to be how parents used to want their children to be in public, seen but not heard. Almost 20 percent of the population of the U.S. is ignored, what percentage does it have to reach before people take notice?