Desiree was a 16-year old honors student attending Eastside High School in Lancaster, California, when we first advocated on her behalf in 2009. Since early childhood, Desiree has had Charcot-Marie-Tooth Disease (CMT), a genetic degenerative neurological disorder that affects a person’s legs and arms. Over time, the nerves to the extremities degenerate, thus weakening the muscles in those areas due to loss of stimulation. Physical activity as simple as standing or walking is often fatiguing to individuals with CMT because of their diminished strength. Additionally, exposure to cold weather is dangerous since they are highly susceptible to hypothermia.
Because of her CMT, and because walking up and down stairs would have been too fatiguing and detrimental to her health, Desiree had to rely on the use of an elevator at school in order to get to her classes. The elevator that Desiree was required to use opened from the outdoors and generally remained locked and inaccessible to students. As a result, Desiree had to rely on school security personnel and teachers to unlock the elevator and allow her access every time she needed to get to class.
Typically, Desiree had to stand and wait outdoors in the mornings before classes, even in colder weather, for a security officer to open the elevator so that she could attend class. Many times, however, there was no security officer to open the elevator when she was on the ground floor, and even the teachers with keys were not allowed to open the elevator when she needed them to. As a result, Desiree was forced to stand and wait for extended periods of time - anywhere from 20 minutes to 2 hours. Being late to class or missing class altogether, became a regular occurrence. Once, Desiree was even left trapped on the 2nd floor during a fire drill. Desiree’s parents asked the school officials for a key to the elevator as an accommodation for her disability; however, their multiple pleas were denied.
This constant tardiness and inability to independently move around campus caused Desiree to miss a significant amount of instruction. Desiree, who up until then had been a star student, got an “F” for the first grading period and was forced to switch out of honors classes (most of which were on the second floor) despite her academic abilities. Desiree also became anxious about going to school and started to dislike being there.
Learning Rights, with pro bono help from Manatt, Phelps & Phillips, LLP, defended Desiree from school discrimination because of her medical condition. Through advocacy, school officials were required to provide Desiree with her own key to the elevator, which enabled her to get to her classes on time. In addition, since she was no longer exposed to long periods of standing or cold weather, she experienced far less fatigue. Her simple but critical access to the elevator enabled Desiree to improve not only her academic record but her overall well-being.
Desiree, now 22, graduated from the University of California, Berkeley in 2015. She carries her old key to the elevator to remind her of the struggles she went through and how far she’s come since then.