Photos courtesy of InQuire Photography | Aslan Ntumba
Isobel Simmons bravely shares her story about what it's like to go from Lacrosse to mobility loss in a matter of years.
One day, Isobel walks to her seminar. Four years later, she cannot get to it without having her blue badge, a disabled parking space, a stick to balance her, a lift nearby, and extra padding for seats. Her life has changed at university and she can no longer get to her seminar if she does not know what accessibility there is to support her.
Isobel Simmons, a final year anthropology student, does not get out much. Not by choice, but because of a severe mobility disability that does not allow her to walk without pain, fatigue, and stress. This is not the same life for every disabled person, she is just one of the 14 million people with a disability in the UK, but her everyday life now includes the necessity of a walking stick for balance and needing a wheelchair on longer days out. By using various disability services at the University of Kent, she has been able to get out of the house slowly.
Going back to her first year in 2016, Isobel was an able-bodied student, running around partaking in the life of a fresher, drinking, and even taking part in Woman’s Lacrosse. By the time she was in second year, Isobel had been elected Social Secretary of the sports club. She spent every Vensday putting on socials and drugging herself up with painkillers – from the advice of doctors – to disguise the damage that was going on, including sciatica and leg ache.
After completing her year on painkillers and drugs, Isobel was only a few weeks into her year abroad in the Czech Republic when she realised the inevitable; she had to take a medical year out. Having been through multiple specialists and long waiting lists without any answers, she was in an inexplicable amount of pain. At the time, she did not care that she was disabled. She just wanted someone to help her.
Using her year out to have private health appointments, as well as resting and recovering her body from the extent of the previous year of university, Isobel decided to come back to finish her degree. University is now a place of ability and motivation for Isobel, and the openminded communication with the people in her school and the Wellbeing Centre gave her the conviction to come back.
“This has been the first bit of independence I’ve had in the past year. I still need support going anywhere new and I now work on a part-time course, but I feel comfortable speaking to these people at university and that means a lot to me now It feels like people understand.”
Two years. That is how long it has taken for Isobel to get a possible diagnosis, an undefined link to what causes her disability and still, there has been no conclusion. There are links to multiple disorders – from Ehlers-Danlos syndrome, connective tissue problem, and chronic illness, as well as persistent pelvic girdle and abdominal pain. Still no answer. Isobel does not underestimate her disability but staying at home laying down – not sitting – in her bed every day is what she calls a normal routine.
Having the disability teams at university has enabled many students to get to their academic hours and being able to enjoy them too. Coming back, Isobel thought it was going to be increasingly difficult at University with the change in workload, the pressure to fit in, and attempts to get around to campus events. In actuality, Isobel does not see it like that. Now, she has been able to focus on her studies more than she did before. She has given herself something to think about because her life is not just doctors’ appointments and pain anymore.
Photo courtesy of InQuire Photography | Harriet Vickers and Aslan Ntumba
Through Inclusive Learning Plans (ILP) and disability services, Isobel has a range of resources to implement into her studies; these include the assistance of note-takers to attend sessions, as well as assistive technologies, mentoring, and support. These extra aids can be the difference between being able to study or not. Isobel uses the note-takers on a bad day when she cannot comprehend going out of the house and her mobility becomes too much, meaning she can continue her studies without worrying about attendance or participation. When being asked where she usually studies on campus, Isobel lets out a laugh. The only place she can study is her bed.
Things are not always easy on campus. When Isobel found a rubbish skip in one of the disabled parking bays, all she could do was protested to the School of Anthropology. She assumed that her complaint would not make any difference. It was removed the next day with the help of anthropology’s disability team. Shelley Malekia, the Student Pastoral Support Co-ordinator, is passionate about accessibility on campus: “Everyone who works or studies here should be able to access all they need without a struggle. In this day and age, equality is so important but sadly it’s not a perfect world.”
Having disabilities in her close family, Shelley has seen problems in accessibility first-hand. She tells me about the particular annoyance with Canterbury High Street where the architectural interest of buildings often restricts the change to more accessible buildings. Accessible toilets are placed around but not enough is being done to ensure new developments. She expressed to me her frustration with it, believing “because of listed buildings in Canterbury, accessibility isn’t a priority. It seems people care more about the history of buildings rather than human beings being able to have access”.
University has opened Isobel’s eyes to the blind eye to accessibility in public. A day out to new places can often leave people with disabilities feeling secondary when there is no support. Isobel explains: “it’s not that as a disabled person I am not suitable for the world, it is that the world hasn’t provided sufficient accessibility. Now I know that I should have accessibility provided for me because the University has treated me like that.”
Accessibility in the general public has many flaws. Outside of campus, care and funding are not the same. As an example, Isobel tells me about taking her first trip to the osteopath inside the Spitfire Ground, where Kent plays county cricket. They did not offer any nearby disabled parking spaces, had no automatic disabled access doors, had only narrow hallways and doorframes which are no suitable for wheelchairs, as well as having an outdated creaky lift inside the building. If Isobel had been alone, she would not have been able to go to her appointment. When discussing these issues to the receptionist, the only excuse given was that “this is an osteopath for sports injuries”. Isobel’s disability was a complication of an early sports injury.
Getting out the house is one adversary for Isobel, but getting into the life of socialising is another challenge in itself. Going for a ‘night out’ now includes driving to the pub only five-minutes away with her friends, and even that can even become too much sometimes. Spending a few hours at Wetherspoons, Isobel is the first to leave and drives home whilst her friends go out to party through the night. Unlike her first year, she goes home and falls asleep because socialising has put enough strain on her body.
With support from her walking stick and knowledge of a nearby disabled parking spot, Isobel is able to go out for a few hours at a pub. At first, Isobel was apprehensive to use a walking stick, but after being encouraged by her friends a few years ago to aid her on a trip to Berlin, the stick helped her get further out into the world. “It was my friends who suggested it to me not a doctor, because my friends empathised with me and encouraged me to use it when I was in pain. Just because my disability is visible now doesn’t mean it’s any worse when it was invisible. I would never have known how important accessibility is a few years ago.”
Disabled students can also get funding for financial support at university but are inclined to disclose their disabilities to receive monetary aid where the amount of disclosed disabilities has doubled to 12% in 2016/17 from 2003/04 when it was 5.4%. Only 36.9% of applicants are offered the Disabled Students’ Allowance (DSA) which is often used to cover the extra costs of having a disability. Figures from the Higher Education Statistics Authority showed that more than half (59%) of students with the DSA felt that the fund was so impactful that they would not feel confident passing their course without it.
Isobel, however, has not had the easiest experience with the DSA upon returning to university. She has had multiple student finance applications rejected and had to redo up to forty pages of documents. Isobel still has not received a DSA this year. Opening up about disability is fine, but it can often put a strain on mental health. “Physical pain is showed to link to emotional pain and I also spend half of my time ploughing through disability forms to make sure I get the right support and accessibility. When you’re disabled or ill it’s hard to put any extra time in anything other than living. Little day-to-day things which you think would never take up energy become very high energy.”
The University of Kent has been offering these services to our students. In January this year, Chris Skidmore, University Minister, called for universities to do more for disabled students to help them succeed. After hearing about the increase in numbers of disabled students at university, Skidmore stated: “There is more work to be done, and I want to see the access and participation plans that universities are beginning to produce increase the ways they can support this group.”
Photo courtesy of InQuire Photography | Harriet Vickers
Disability History Month (DHM) is running from November to December. The theme of ‘Leadership, Resistance and Culture’ looks to focus on the necessity of future change for this group of people. This year, the University and Kent Union are running various events that everyone can attend, from accessible film screenings, talks, and lectures, to plays at the Gulbenkian and a session by Change 100 where attendees are able to discuss disabilities and long-term health conditions in employability.
One figure at Kent which remains a massive influence in disability rights was former Kent academic, author and disability activist Mike Oliver. After passing away earlier this year, the wellbeing team at the University is hosting an exhibition in Keynes College on his work with the Social Model of Disability. The Kent Student Awards are changing this year, where Mike Oliver’s influence is now symbolised in the Mike Oliver Award for Improving Accessibility, in the hope that students will strive to achieve the same development that Oliver himself did for the disabled community.
Natalia Crisanti, Communications Officer for the Student Support and Wellbeing Team, hopes the events of DHM will encourage students and staff from all backgrounds to come out and celebrate: “It’s fitting that we will be asking our Kent community to engage with the exhibition and reflect on what our current culture and barriers might be, and what we can do individually and collectively to address these.”
Although change is happening around campus, Isobel is certain that there is always more to be done: “I think there should be a focus to say that actually, disabled people are people. If you go on a website and it has no accessibility layouts or information, I cannot go out. We can do simple things like hiring more disabled people, offering disabled training and making accessibility clear. I need to know that companies are aware of.”
“What’s the most important thing supporting her as a disabled student?” I ask Isobel. After a short moment, she replies: “The most important thing is talking to kind, supportive people. Just because I am disabled does not mean I am my disability, I’m still the same person I was before, it’s just I have physical limits. That shouldn’t have to mean anything.”
This article is part of our one-off edition of IQ Magazine, out from November the 29th 2019. Pick up the magazine on campus in our InQuire distribution bins in Keynes, Co-op, the Templeman library and other locations on campus.