Photographed: Jacqueline Haley, Executive director for the Greater Boston Sickle Cell Disease Association
In response to a Federal investigation by the Department of Education for civil rights, the Boston Public School system agreed to recognize sickle cell disease as a disability.
This decision came after years of complaints filed by parents and organizations like the Greater Boston Sickle Cell Disease Association. Although Sickle Cell Disease is THE most common hereditary blood disorder, school officials and health care providers are not well versed in the disease.
In a recent Boston Fox 25 news report, a BPS parent and Alumni shared their horrific experience within the school district. As a fellow BPS alumnus, I was fortunate not to share the same experience.
I attended The English High School in Jamaica Plain. During my time there, I was fortunate to be under the care of two exceptional school nurses. They were not only well versed in the nuances of sickle cell disease, both nurses fiercely advocated for me. With the help of my exceptional nurses and understanding teachers, I was able to graduate with a 3.2 GPA. (That is remarkable for a student that was in and out of the hospital.) I was also accepted to three Universities.
"The problem isn’t just in schools" - Jacqueline Haley
Unfortunately, I was in for a rude awakening. My college experience made me aware my health disparity would prolong my academic achievement. While attending UMass Boston, the University was not able to make any accommodations. According to New England Pediatric Sickle Cell Consortium, unlike public schools, it is not a college or universities responsibility to seek out student with disabilities. In fact, it is the responsibility of the student to seek appropriate accommodations and follow up with the designated disability officer within the institution. This process is overwhelming for a college freshman let alone a freshman with sickle cell.
I flunked out of UMass Boston during my sophomore year. It took me 15 years to receive my Bachelor's degree.
This issue is not just evident in schools. Individuals with sickle cell face discrimination in the workplace.
When seeking employment, many with SCD are hesitant to inform potential employers about their illness.
Although laws are in place to protect individuals with disabilities, the complications of SCD are so unpredictable (and sometimes far-fetched) that we rarely tell our employers when symptoms occur.
Employers do not understand that symptoms can be exacerbated by stress, temperature changes, dehydration, exertion, and bacteria. Explaining this fact to Human Resource Department's can be exhausting.
There were several occasions where employers did not believe that I was having a Sickle Cell crisis.
Caregivers are often pulled away from their jobs to take care of their loved ones.
Fortunately, The Family and Medical Leave Act of 1993 (FMLA) provides employees with job-protection.
However, many companies only offer unpaid leave for qualified medical and family reasons.
I am so proud the Boston Public School district is the first school district in the nation to grant special accommodations for students with sickle cell disease.
It is my sincere hope that this progress will change the lives of those impacted by SCD on college campuses and within the corporate sector.
We still have a long way to go!
