Educational Advocacy and Accommodations for Ehlers Danlos Students

Students with medical conditions, such as Ehlers-Danlos Syndrome (EDS), should have equal educational opportunities in all countries. Unfortunately, that isn’t the reality – according to Amy King, an EDS student and advocate for adult education in the UK.

Many adults living with Ehlers Danlos Syndrome (EDS) are highly intelligent, motivated and hard-working individuals looking for the opportunity to learn and contribute to their communities. They don’t want their the limitations of their disorder to hold them back, but they may need extra accommodations from their educational institution. (At the end of this article, protections and provisions for US students with hidden disabilities are addressed.)

EDSer Amy King was named the “National Young Adult Learner of the Year” in 2014. She has become an adult educational ambassador, campaigning for better adult education in the UK. Here is an EDS student’s firsthand account of her struggles and successes, written by Amy King.


“Access to adult education is one of the key issues affecting our country (UK)”    Photo: Alamy

“I have dreamed of becoming a scientist ever since I was child, and though I’m now well on my way to achieving that dream, it certainly hasn’t been easy. I have experienced nearly every avenue of education possible and have found that learning as an adult has been the most successful route in my pursuit of a science career.

I have had a turbulent education. I suffer from a chronic health condition called Ehlers Danlos syndrome (EDS) and have undergone many intensive and painful surgeries. As a result, I spent three years out of conventional education, being home-schooled.

I was rarely supported by my schools at that time and was told I wouldn’t amount to anything due to ill health. I was discouraged to pursue a career in science, being told “pure science wasn’t for girls”. Nevertheless, I worked exceptionally hard and despite being predicted low GCSE results, I achieved three As and seven Bs.

Studying A-levels at school wasn’t any better – even one of my tutors said I would never pass my exams and should give up. This was one of the lowest points in my education as I didn’t realise there was any other viable educational route.

However, after much contemplation and research, I left conventional schooling and continued my studies as an adult. I enrolled on an A-level maths course at a local adult education college; where I achieved an A grade. I then went on to study A-level biology, chemistry and physics at Bromley College, where I was one of the oldest students in my class.

I passed my exams with AAB grades and was accepted as a mature student at University of Greenwich to pursue a science career. I’m now studying for a Master’s in chemistry.

Adult learning is incredibly important to me and has completely changed my life; from being a young girl who no one thought would achieve anything, I became something I wanted to be: a scientist. Adult education also gave me an outlet to focus on something other than my health and helped me cope with the pressures of the illness.

Access to adult education is limited in this country (UK); people need to shout about the opportunities it can bring to mature learners, says Amy King.

Access to adult education is one of the key issues affecting our country (UK). With continuing loss of funding for 18-24+ education, it’s becoming more difficult for young disabled people, like me, to access education when they’re older and able to study.

By failing to offer accessible adult education, the country loses a vast array of individuals with particular skills sets required for specialised areas of work. People need to shout about adult education and the opportunities it can bring, because just because you’re an adult, your education doesn’t have to end.

In June 2014, I was named National Young Adult Learner of the Year by the adult education charity NIACE. Following my award, I have become an adult educational ambassador, campaigning for better adult education for people.

Looking back, never in my wildest dreams did I imagine I would win this award, and I urge those with an outstanding route into adult education, to come forward and take part in Adult Learners’ Week. Nominations close today, so please take part in adult learning, learn a new skill or gain a new qualification, it really could change your life.”

In the US,  school districts are responsible for identifying, evaluating, and providing individualized special education and related services to meet the needs of students with hidden disabilities. At the postsecondary level, key provisions are outlined by the government through Section 504 of the Rehabilitation Act of 1973. This is designed to protect the rights of persons with disabilities in programs and activities that receive Federal financial assistance. Read more about  Section 504. 

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