Living with Ehlers-Danlos syndrome: A woman's fight for disability rights in her apartment complex

A wheelchair-bound and mostly bedridden Athlone woman has spoken out about the daily battles she faces living with a rare, incurable genetic condition - made worse by what she describes as a lack of disability-friendly infrastructure in her residential building.

Gafsa Garson suffers from Ehlers-Danlos syndrome, a rare connective tissue disorder that has progressively worsened over the years, leaving her dependent on a wheelchair and confined to bed for most of the day. She takes 36 tablets daily to manage the condition and its comorbidities.

“I have a connective tissue disease. It is incurable,” said Ms Garson.

“I was diagnosed years ago. I could walk at first, but my condition gradually deteriorated. It affects all systems - the nervous system, the skeletal system, everything.”

Ms Garson, who lives with her daughter, a tertiary student, struggles with even the most basic daily activities, including writing. Five years ago, doctors confirmed that she would no longer be able to walk.

However, she said her biggest challenge is what she describes as "blatant negligence in enforcing disability laws and national building regulations" at the sectional title apartment complex where she lives.

Ms Garson said the lifts in the building are in a poor and dangerous state due to inadequate maintenance, making movement and emergency evacuation nearly impossible.

She accused the trustees of the Rabat Body Corporate and Trafalgar Property Management of failing to comply with national building regulations, which require buildings to provide safe access and egress for people living with disabilities.

“They have a legal duty of care,” she said.

“My disability rights and human rights are being infringed, and my life is being endangered. In an emergency, I would not be able to leave the building safely because the lifts and disability structures are not properly maintained.”

Ms Garson lives on the third floor and recalled a traumatic incident where she was trapped in a lift for over an hour.

“My doctors have written reports stating that proper access and egress are of utmost importance given my poor health condition,” she said.

She added that many people are unaware of Ehlers-Danlos syndrome and hopes that by sharing her story, greater awareness can be created.

“Not many people know about this condition. I am wheelchair-bound and mostly bedridden, yet I live in a complex where the common areas are not wheelchair-friendly. This is not just about convenience, it is about safety and dignity,” she said.

Ms Garson has appealed to building owners and managing agents to comply with national building regulations to ensure their properties are accessible and safe for people with disabilities.

Trafalgar Property Management manager, Shaheed Jaffa, said: “We, as the managing agents, act on instructions received from the trustees and would suggest that they respond accordingly.”

After asking Mr Jaffa for the contact details for the trustees, he was told by the trustees that he did not have permission to share it with Athlone News. The Trustees told Mr Jaffa to tell Athlone News that the matter was referred to the ombudsman, and that is the platform where the merits and demerits of the matter will be dealt with.

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