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Universities Must Prioritise Disability Support

11/08/2017 11:33 BST | Updated 11/08/2017 11:33 BST
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Being one of a small number of disabled Vice Chancellors in the UK I like to believe that, along with my colleagues in student disability and mental health support, I have unique insight into the challenges faced by disabled people who are perhaps encountering university for the first time.

It is important to appreciate that not all disabilities are visible. Regent's University London currently has around 250 students with a registered disability, and almost half of this number relate to specific learning difficulties, including dyslexia and dyscalculia.

Support in this area should be a priority for all higher education institutions.

Regent's is widely recognised for its work with disabled students and even visiting partners and we are currently investigating the latest assistive technologies, such as open reader document scanning, and indoor navigation technology to support the visually impaired.

My own disability story involves a physical condition that radically reduces my quality of life, although I am fortunate it doesn't directly affect my work, thanks in large part to the support I receive from my family, especially my wife, colleagues, LloydsPharmacy Clinical Homecare (LPCH) and the medical team who care for me at the National hospital.

Earlier in my life I was a keen sportsman - a competitive swimmer, high board diver and international squash player. Then, around 15 years ago, I noticed that I could no longer swim, wasn't quite able to run around the squash court as well as I used to and felt that something wasn't quite right.

Although most tests showed nothing seemed to be wrong, a specialist consultant hypothesised that I might have a rare case of late onset Pompe's disease, a genetic condition normally identified in children. After six months of further tests this diagnosis proved to be correct. The prognosis at that time was death within 18 months.

However, I was fortunate that the Pharmaceutical company, Genzyme, had developed an artificial enzyme that can be infused fortnightly and I can receive this in my office.

Pompe's disease affects the body's ability to process glycogen effectively, leading to impaired organ and muscle function. Following this diagnosis my mobility deteriorated and I can now only walk for short periods and regularly need to take breaks. The condition also affects my breathing so I have to sleep with a ventilator.

Luckily in my case, having access to LPCH on campus has quite literally proved to be a lifesaver. My treatment includes:

  • Enzyme Replacement Therapy (ERT)
  • Fortnightly, 4-hour, 800ml infusions at the office
  • Connection and drug administration by a LPCH nurse
  • Regular delivery of medication and equipment to the office

I've even had this vital therapy administered while officiating at graduation ceremonies.

A nurse arrives and connects me to the ERT so that I can continue working at my computer while the infusion takes place. My duties have never been affected by my condition and I've even had this vital therapy administered while officiating at graduation ceremonies by disguising the equipment under my robe.

Receiving treatment in hospital is simply not an option given my demanding and varied schedule, often resulting in an 80-hour working week. The idea of having to give up four hours every two weeks to visit hospital for treatment is just not feasible.

If this is the case for me, then how can universities better apply such thinking and processes for students and staff who need similar support?

Firstly - anyone with a disability in higher education should recognise that they are not alone. The number of UK-domiciled entrants to full-time first degree courses with a known disability was 44,250 in 2015-16, an increase of 56 per cent since 2010-11. Of those with a known disability, about 18,750 (42 per cent) were in receipt of Disabled Students' Allowance (DSA).

Every day I count myself lucky for the tremendous help I receive. I don't believe I could lead my day-to-day life without it.

I have now been receiving treatment for more than seven years. Every day I count myself lucky for the tremendous help I receive. I don't believe I could lead my day-to-day life without it.

Studying and working in a university is a privilege. It offers unmatched learning, network and career development opportunities. Initiatives like homecare should not be seen as disruptive. Quite the opposite - they should be viewed as a pathway to a new future.

Studying with a disability should not be a minority cause. At Regent's, we have a very strong set of values including diversity, inclusion, mutual respect and good citizenship. Students are encouraged to look out for each other and, if they are experiencing difficulties, to talk to academic and support staff to help them better understand the challenges they face. We are a relatively small university with a family atmosphere and this helps everyone get to know each other.

It is up to universities and students themselves to help form a connection and find solutions.

Lecturers don't always have experience of disabilities and special needs, so it is up to universities and students themselves to help form a connection and find solutions that genuinely work in learning environments. Sharing individual experiences and continuous communication is vital.

HuffPost UK Lifestyle has launched EveryBody, a new section calling for better equality and inclusivity for people living with disability and invisible illness. The aim is to empower those whose voices are not always heard and redefine attitudes to identity, lifestyle and ability in 2017. We'll be covering all manner of lifestyle topics - from health and fitness to dating, sex and relationships.

We'd love to hear your stories. To blog for the section, please email ukblogteam@huffingtonpost.com with the subject line 'EveryBody'. To flag any issues that are close to your heart, please email natasha.hinde@huffingtonpost.com, again with the subject line 'EveryBody'.

Join in the conversation with #HPEveryBody on Twitter and Instagram.