If you follow only one person on TikTok, make sure it’s Ruth Codd. Using her platform to amplify disability awareness, with her enigmatic style and quintessential Irish humour, the 24-year-old Wexford-native has amassed more than 610,000 followers on the video sharing platform.
t the time of our (Zoom) interview, Ruth is less than one week post-operation and has a beaming smile on her face.
“Hopefully this will be the operation to fix it so I can get back to world domination,” the professional make-up artist, barber and TikTok star says with utter determination and admiration, the kind that makes you adjust in your chair and straighten your posture.
Aged 15, Ruth suffered a broken left leg which failed to heal, causing her agonising pain and ulcers which could not be remedied. In an attempt to rectify the broken leg, Ruth underwent eight operations during her teens but, due to her poor quality of life, made the life-altering decision to amputate the leg.
“I had to wear splints and a really heavy cage around my leg. My quality of life wasn’t good. I couldn’t work and it was affecting me day-to-day so I decided I would get it amputated.
Adjusting to life with her new body was a profound experience, she says, despite having to learn how to walk again.
“I was just so determined to get some quality of life back and some form of normality that I was willing to do whatever,” she says, recalling memories of using crutches for three years and missing out on numerous experiences during her late teens. “It only took me two days to learn how to walk again – I think because for the first time in eight or nine years I wasn’t in pain. It is like a massive weight off my shoulders. I took the step with the prosthetic and for the first time in years it wasn’t sore.”
She attributes her growth in self-confidence to her prosthetic, observing the new lease of life it has afforded her. “I would say my amputation has given me more confidence. I probably love myself more because I know I’ve fought so hard for the simple thing of just walking around. It has given me back my life.”
Drawing on her experiences, the content creator uses her flourishing TikTok presence as a springboard to make disability more visible, commenting that the “realness” and “rawness” of the platform allows her to be her colourful self. Her content is witty, yes, but also eye-opening. On the subject of online trolls, she believes she’s well-equipped to deal with the negativity – for every 100 comments “there’s always one nasty comment”.
With many strings to her creative bow, Ruth plans to return to the UK where she worked as a professional make-up and special effects artist with some of the biggest West End theatre productions, but is also excited at the prospect of continuing her disability advocacy work on social media.
“Hopefully, if anything, my content makes people less scared to approach the subject of disability and raises a bit of awareness about how to approach the subject. This whole TikTok thing is taking off – and I really enjoy making YouTube videos. I’ve learned to just let life happen and see where the road takes me and what opportunities come my way.”
‘I’ve retrained how I think about disability as a label’
Róisín Ní Haicéid
Listening to Róisín Ní Haicéid’s captivating indie-rock debut EP Airport Dads, it’s hard to believe her band, Banríon, is only in its infancy. “Music is pretty new. I did some guitar lessons as a teen but nothing major,” the north Dublin-based musician, student and activist tells me – all blasé and cool, as though her band hasn’t been heralded as the captivating new presence on the city’s thriving rock scene.
Music elicits multifaceted responses from the human psyche; it can make us want to dance, cry, sing. For Róisín, it offers healing qualities, too. Writing candidly about her disability and the relationship she has with her body, Ní Haicéid’s music is, at times, self-deprecating, raw and evocative.
Aged 13, Róisín was diagnosed with idiopathic scoliosis, a rare musculoskeletal disorder that predominantly affects young girls during puberty, and causes the spine to curve into an ‘s’ shape. What followed was a series of aggressive and exhausting surgeries which involved placing a series of titanium rods and screws on either side of Róisín’s spine to help straighten and support it. Due to major complications from one procedure, Róisín suffered temporary paralysis down her left leg resulting in permanent weakness and muscle atrophy and she now relies on a walking aid and a supporting ankle-foot orthosis (AFO) leg brace.
Then came months of strenuous rehabilitation and adjusting to life with a new body.
“I woke up from that operation with no feeling from the waist down and in the most amount of pain I’ve ever been in,” the musician recalls. “I spent the next four months at the National Rehabilitation Hospital getting my legs back working”.
Another setback with scoliosis in 2018 saw Róisín take one year out of her studies at Trinity College to focus on her health and wellbeing. It was during this time that music took centre stage and she admits the creative process of songwriting has helped her to make peace with her disability.
“It gives whoever wants to listen a real insight into my experience as a person who has had five spinal surgeries in six years, or who uses a walking stick. I think it’s a pretty brave thing to do.”
Adjusting to life with limited mobility is, at times, a turbulent rollercoaster fraught with highs and lows. Finding an online community and engaging in activism, she tells me, not only helped her to accept her disability, but to establish a new meaning for ‘disability’, one that puts ‘ability’ to the forefront of the conversation. “I was in denial about it,” Róisín says of the early stages of her disability.
“It was through disability activism that I have retrained how I think about disability as a label. Society disables you more than your own condition does because of stigma, the lack of equality and accessibility.”
Róisín dubbed this summer as “the summer I decided to stop hiding my bionic leg” and, four years on from the operation that changed her life, the Sociology and Social Policy student enjoys pushing the boundaries of her own limitations. Although, she admits, she has some way to go yet in terms of total self love and acceptance.
“Any kind of positive body image that I feel is not something that comes naturally and there’s so much unlearning to do. As a whole I feel good about my body image now, but it took a long time and a lot of work. I hope it’ll only get better as I get older.”
‘I’ve retrained how I think about disability as a label’
Niamh Ní Hoireabhaird
Over the past six months, students with disabilities have been adapting to online and remote learning as a result of the coronavirus crisis. Prior to the pandemic, the wants and needs of students with additional needs have been deemed “too difficult” to implement, but third-level institutions have been quick to transition to online learning when required by the general public. So says Niamh Ní Hoireabhaird, Officer for Students with Disabilities at Trinity College Dublin Students’ Union. “Learning is becoming a lot more accessible. It’s a real shame that it took a global pandemic for that to happen, but Trinity has been great at listening.”
The 24-year-old history student, disability advocate and activist takes pride in her role as officer for Students with Disabilities, but worries that the impact of coronavirus on those with a disability will be long-lasting and critical. “Because of Covid, we can’t host mixers for students. It’s very sad I think. Students with disabilities, in particular, are going to miss out and I’d hate for them to feel alone and isolated sitting at home. We’re looking at moving things online and then in December we have the UN international day of persons with disabilities – we’re going to have something big to celebrate that.”
Niamh has Friedreich’s ataxia, a progressive neuromuscular disease for which there is currently no cure, as well as cardiomyopathy and scoliosis, and has relied on her wheelchair for mobility since the age of 20. “It’s very complicated,” she says of her rare condition, “but the wheelchair is a great asset to have in my life. I know some people see it as restrictive when they say they’re bound to a wheelchair, but I don’t see that at all. My wheelchair gave me my independence.” The progressive nature of Niamh’s condition means she’s had to readjust to her body and learn to love it again.
“That was really difficult for me,” she says of her transition from walking unaided to using a wheelchair. For Niamh, her biggest roadblock as a wheelchair user was how she would be perceived by the world around her. “I feel like it definitely did make it harder to accept myself. I don’t think I was concerned with how I viewed myself, but rather I was more concerned with how others viewed me,” she says candidly. “In my daily life I do wonder what people think of me. Do they look at me and think, ‘oh, poor Niamh’?”
Born from her passion for disability activism, community and sense of belonging, Niamh established DisabilityAndI, a storytelling platform for people with disabilities to share their experiences which, in turn, has helped Niamh to accept her own journey.
“I do still think I’m on the journey of getting there,” she says of her relationship with her body. “I’m trying to find a compromise between giving myself enough time to relax and take care of myself but also living my life. It’s a hard thing to do, I’m still figuring it out.”
“I think I’ve accepted myself at the moment. It could change a year or two down the line but at the moment I’m very happy.”
‘Disability is a core part of my identity. It’s everything I am. It’s made me the person I am’
Disabled Women Ireland co-founder
Alannah Murray’s achievements belie their youth. At 23 years of age, the Cavan native has accomplished more than most will in a lifetime. Alannah was awarded a place on the prestigious Washington Ireland Programme – a six-month programme of personal and professional development that brings university students from Northern Ireland and the Republic of Ireland to Washington DC, for summer internships and leadership training; she delivered a TEDx Talk on the subject of disability and society; she is a co-founder of Disabled Women Ireland, the only dedicated organisation to advocate for the rights of women, trans and non-binary people with disabilities in Ireland; and she is currently studying to obtain a masters degree in Research in Creative Media from Dundalk Institute of Technology.
“It feels weird to say that I’ve done those things,” Alannah tells me, recounting the commute she used to have while living in Washington DC, which involved passing the White House every day. The opportunities she has been awarded are even more remarkable given the fact that Alannah navigates life in a wheelchair and lives with dermatomyositis, a rare and progressive autoimmune disease marked largely by muscle weakness.
“I don’t remember how it feels to run around. I know that I did it but I can’t remember the sensation of it anymore,” she tells me. “Eventually, when I was 10, the doctor said ‘enough is enough’. I had calcium deposits sticking to my muscles, causing my joints to stiffen, so I wasn’t able to straighten my knees anymore. We agreed it was chair time. At this stage I had already almost died once.”
Despite this, Alannah didn’t identify as a disabled person until university. It was there where she was exposed to other like-minded people who shared a similar experience.
“I grew up completely mainstreamed and I had no experience of what ‘disabled’ was,” Alannah says of her early childhood and, later, their experiences in third-level education. “As I got older and went to college, I realised I could be this whole new person. I’d never been around that many disabled people before in my life. It was terrifying, but it was a big turning point. For me, disability is a core part of my identity. It’s everything I am. It’s made me the person I am.”
Years of trauma and long-stay hospital visits left Alannah feel disconnected from herself, but she is learning to reclaim her autonomy through self care and being in tune with their body.
“I completely disconnected to my sense of self and had so many unhealthy coping behaviours for so long. I hated everything about myself. Now I love to cook, I love skincare, I love taking baths and I love taking pictures of sunsets. I got tattoos because the doctors told me I couldn’t!
“I’ve learned that it’s okay to do things just because it makes you happy. I think that’s been my big takeaway in the past year or so: that it’s actually okay to just exist and not work yourself to the ground or please other people. It’s cool to just vibe sometimes.”
While coronavirus restrictions have eroded independence, Alannah is continuing her studies and working from home.
“I come from a big family and I’m used to being around people so I’d never been on my own, but I’ve enjoyed it. Me being in this house is the ‘backpacking-through-Thailand’ equivalent of finding myself. It’s been great.”
‘I love my body. I love my arm. I know for a fact I wouldn’t be in the situation I’m in if I didn’t have a disability’
Seventy-six consecutive days is the total amount of time Paralympic swimmer Ellen Keane spent away from the swimming pool during the height of the coronavirus pandemic. “My confidence grew because of swimming,” she says, reflecting on the earlier days of her professional career. “Instead of looking at what my body couldn’t do, because of sport I was getting stronger than most able-bodied people. I was questioning why I was ever ashamed of my body when I’m probably able to lift more with one hand than the average person [can] with their entire body.”
Born with dysmelia, a congenital abnormality characterised by missing or foreshortened limbs, (in Ellen’s case, her left forearm), she soon realised that instead of focusing on what she couldn’t do because of her disability, she could focus instead on her strengths, pumping all of her efforts into a sport that would soon see her becoming Ireland’s youngest Paralympic athlete at 13, and being crowned a three-time Paralympic swimmer at 25.
Ellen, who is also completing a degree in Culinary Entrepreneurship at the Dublin Institute of Technology, has a complex relationship with her body, and attributes her growth in self-confidence to her “stubbornness”. “I never liked people helping me,” she says, recalling moments of frustration during her childhood when tying her hair up seemed like an impossible task for the athlete who can now swim a 100m breaststroke in under two minutes.
“It’s just a way of life,” is how the young athlete describes navigating her world with one arm, noting that, at times, her disability can result in periods of anxiety and frustration. She overcomes these periods, she says, by being open and honest. “I have a psychologist to talk to and I think it’s so important to have an outlet and have those conversations.”
Growing up Ellen admits she was “so insecure” about her arm and used to hide it. Going to college, she says, was a monumental turning point in establishing a healthy relationship with her body.
“Once I started to show off my arm, loads of people who I looked up to or had any issues with their body or body image, they were all like ‘because of you I want to show my disability’, and I was like ‘wow’! It’s incredible the effect you can have on someone without realising it.”
When asked if she takes ownership of her disability, she answers with a wholehearted “yes”.
“I love my body. I love my arm. I know for a fact I wouldn’t be in the situation I’m in if I didn’t have a disability. By taking ownership and being proud of your disability you’re giving other people permission to do the same and showing people who aren’t disabled or who will never experience a disability that it’s not a scary thing or a bad thing.
“I think a lot of people with disabilities need to realise that their disability is a powerful thing and it’s their little bit of magic that they can use to have a great life.”