Some diseases don’t reveal themselves until it’s too late. Some lie dormant until an unsuspecting teenager feels mild back or ankle pain. Then, within a matter of months, the teenager is bedridden, unable to move through the pain. Ankylosing spondylitis (AS) is one such disease. It’s a type of rheumatoid arthritis that causes severe joint and spine inflammation. AS is an illness which is difficult for providers to diagnose early because it can manifest as everyday mild pain. There is no normal pattern for this illness, as the severity changes from day to day. At any point, an otherwise healthy person can find it excruciating to take a single step. Therefore, policymakers who affect the layout of public spaces must appreciate the barriers created by these rare disorders. My story can provide a specific example of how policy must improve.
The first time I felt AS in my body was around age 13 or 14. I felt a growing chasm between my peers and me as I began to withdraw from normal activities. At the age of 16, my illness became so severe that I could not leave my bed for months. During this time, Iraq was at war with the U.S., and we did not have skilled providers to diagnose me. In 2007, I traveled to Syria and then to Turkey to find a specialist. Unfortunately, when I finally found a doctor who was able to diagnose me, he told me that it was too late to reverse the damage. It was so difficult to accept the reality that I would never have my health back and I would have to live with the excruciating pain every day.
With the help of my caring friends and teachers, I was able to complete my high school education and apply for a teaching program. In going through this process with my illness, I learned firsthand the burden of stigma against those with disabilities. I realized that life would never return to normal, and that I would have to navigate this world differently than most. At 23, I left Iraq to escape the war and became a refugee in Turkey. This was the most agonizing time in my life, as I was battling the hardship of refugee life, on top of managing my severely flared-up illness.
My journey led me to the U.S. where I continued my education despite the challenges. I started college in 2014 but was hospitalized just two weeks into my first semester. The college I attended was on a hill, all the roads were steep, and I had a very difficult time walking around the campus. Accessible doors and parking were scarce. However, I was lucky during this time because I majored in Social Work, and my professors gave me tips on navigating the campus. This issue stayed with me until my graduate studies, when I earned the Diversity & Disability Fellowship, which gave me a chance to look at the policies that had impacted my access to campus all these years. I realized that the school was using the Americans with Disabilities Act of 1990, which stated that businesses and public places must undertake “readily achievable barrier removal” (ADA National). However, this statement did not provide clear guidelines and allowed businesses to use their discretion on what was accessible. This was the gray area that I was trapped in, while the college responded to each of my inquiries saying that it would cost too much money to build accessible parking and install accessible doors.
Despite being familiar with the campus, I relapsed and had to endure agonizing pain almost every semester. Walking from a regular parking spot took almost an hour, while it would take five minutes for others. Once, I approached a building that did not have accessibility doors, and it was like a nightmare because pushing and pulling were very painful for me. Whenever I raised these concerns, my school responded that they were following the ADA laws, and they did not have the financial incentive to make changes. However, these laws were not comprehensive, meaning that when people like me raised a concern, the school benefited from the vague ADA laws and could ignore my needs.
To minimize the barriers faced by people with disabilities, policymakers must make the ADA laws more comprehensive and less open for interpretation. These laws may seem reasonable for non-disabled, but they are life-changing for people with all types of disabilities. Moreover, colleges and universities must take disability needs seriously and should carefully listen to students with disabilities. If I had not attended college, I would have remained in absolute isolation and poverty. I would not have had the chance to learn higher skills, make social connections, and build my life. My disease is a reality every day. I cannot ignore it, and neither should public institutions. If there is one thing the government and the education system can do for people with disabilities, it is to make education more accessible by providing a comprehensive ADA requirement for schools, updating the disability features to address new challenges, and monitoring the implementation of these requirements in academic institutions.
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