Meet Charli, autistic and disabled activist and Lancaster Uni student
“It’s difficult to push against a system that doesn’t seem to be built for you.”
When freshers week inevitably rolls around, most students will be worried about what their flatmates will be like, what socially distanced clubbing will look like, and how many packets of super noodles they can afford without going into their overdraft. For Lancaster first year Charli, her autism and chronic illness mean that these are often the least of her concerns.
Being chronically ill means Charli experiences widespread chronic pain and chronic fatigue. Unlike being tired this doesn’t improve with rest and impacts her whole body. She also experiences subluxations (partial dislocations), meaning that a dislocated shoulder can be completely “normal.”
Often Charli has days where she is too unwell to do anything. Everyday activities can take her a lot longer to do than most people. As part of her autism, she experiences severe anxiety and sensory issues, this also affects her concentration, communication and social skills, amongst other things.
“Moving to a university 2 hours away was definitely a risk.”
Like many, coming to university meant Charli was taking on things she didn’t have to do as much at home – such as cooking and laundry. Pain and fatigue limit how much Charli can do in a day. This played on her mind when deciding to attend university. Luckily, she decided to “just give it a try.”
But Charli still describes her outlook as “cynical” and rested on the reassurance that she “could just drop out or transfer to near home if need be.”
“Just structurally, it’s a lot more accessible than universities that are based in old cities.”
Lancaster University felt a lot more accessible than the others Charli visited before applying. After she firmed her offer the ILSP that was made for her seemed “pretty comprehensive.” Confident she would get the accommodation she needed she felt that Lancaster would be a good choice.
“My two departments gave me dramatically different help.”
Charli describes her year as a “mixed experience.” This was highlighted by the fact that she was a double major this year, both departments took different approaches in supporting her.
She describes her experience with her administrating department as “more accommodating than [she] ever could have asked for.” Support included giving extensions when she needed them, referring her on to other parts of the university when she needed help and swapping lectures around where possible.
However, the other was not as helpful. The difficulties arose when it came to extensions: “I had to get my administrating department or my counsellor to email them a lot because I struggled by myself.”
Although Charli dealt with this well, it did impact her decision to change her degree.
“ILSPs look good but I don’t think they’re put into practice very well.”
Obviously, Charli can only speak for her own experience but she thinks the university “still have a long way to go.”
The pressure is put on the disabled student to speak to seminar tutors and outline what they think they need – rather than the other way around. She describes the disabled student experience at Lancaster University as one “based on luck.” Accessibility and inclusivity comes down to the individual staff and departments.
“I have definitely found students to be more supportive than some staff.”
Charli points praise towards her flat and her other friends for helping her feel included. Their support has ranged from helping her with everyday living, where needed, to accompanying her to meetings with her department to help her advocate for herself.
One meeting, in particular, stood out to Charli. She was told that she just had to pass first year and shouldn’t worry about “needing certain accommodations.” Although she understood that this was true she felt she should’ve been given the opportunity to do as well as anyone else.
“I don’t think lectures work as a system whether you’re a disabled student or not.”
Charli sees the main flaw to be a lack of consistency across departments.
“Having an ILSP is all well and good if no-one is going to actually implement it, and the fact that I did three different subjects this year (due to the minor system) and none of them had the same policies for extensions or support.”
Not all disabled students are lucky enough to have a diagnosis so support should be easy to access without intervention by the disability service. In addition to more funding and availability of counselling and well-being services, Charli rightfully points out that staff should have disability awareness regardless of their role.
Charli believes that the format of all university teaching needs radical change. Lectures are becoming redundant for most students and “other forms of learning would be more effective.”
“Supporting marginalised groups should not only be on the shoulders of the forums and their PTOs.”
Outside of the work of the Disabilities Forum and the Part-Time Officer the University hasn’t been seen to do much by way of support in the eyes of many disabled students.
“I haven’t seen LUSU do much either,” Charli added. Although, it was good to see ableism mentioned in the microaggressions and “check your privilege” campaigns by VP Welfare this year.
But often it feels that supporting marginalized groups entirely “rests on the shoulders of the forums and their PTOs. Despite Disability Pride Month falling where the new PTOs haven’t had access to their social media, Charli remains optimistic and excited to see what Molly does this year.
She has already shown support to Charli in the past in sharing the content she’s made for the Womens+ Forum as well as some of her own content from her activism page.
“Even simple readings can take me up to half a day, and essays can take me weeks.”
While every disabled student faces different difficulties, Charli’s autism, dyspraxia and chronic symptoms result in the need for meticulous planning. And even then, “flare-ups can change things at any moment.”
Lectures can be really difficult “because they’re often overwhelming and they cause a lot of sensory issues that neurotypical students are unlikely to notice” – background noises and bright lights can cause problems.
Charli feels that her academic difficulties have a knock-on effect on her social life as a disabled student: “When I prioritise my academics it means I have to sacrifice being with friends or going to society socials as I need to rest or need extra time to complete tasks and work.”
Severe anxiety also prevents her from going out. This has meant she’s “not spent as much time “getting to know Lancaster” or “just having a social life” as she would’ve liked this year.
“I’m invisibly disabled now I don’t use mobility aids very often, and generally I don’t have to disclose my conditions before I’m ready.”
Charli commends the Student Scout and Guide Organization as an “amazing society”, who have been extremely welcoming and “open to improving their accessibility.” She also sings the praises of the Women+ Forum community.
Getting support as a disabled student appears to involve a lot of admin – “there were weeks I was in multiple meetings every day, and a lot of the time it wasn’t fruitful.” This left Charli close to dropping on multiple occasions. Keeping up academically and socially is enough of a challenge without the additional ablism in the higher education system.
Charli described a concerning contrast between her academic efforts and time spent in search of support: “I would actually say I spent more time advocating for myself, sending emails and sitting in meetings than on my degree this year.”
“It’s annoying we have to jump through a lot of hoops that others don’t, but it does help.”
To other disabled students applying to university Charli’s first piece of advice is to apply for a DSA as soon as possible. This can be a lengthy process so it’s best if you can “get used to your equipment before starting term.” Another priority is getting an ILSP put in place early by emailing the disability service.
“If you’re in the early stages of applying, go to open days, speak to their disability teams and get a feel for the accessibility.”
Charli concludes by stressing “as a disabled person, you know yourself and your conditions better than anyone.” Going to a uni closer to home, choosing to be a part-time student or deciding that university isn’t for you is all part of the process of knowing the limits of your disability.
“Even though there can be issues, we can succeed and we have the right to gain an education as much as anyone else.”