Health

Disabled rights activist Dermot Devlin shows the power of a positive approach

Dermot Devlin says his goal is to improve lives and fight for a more equal society for disabled people. The inspirational Co Tyrone activist talks to Mairead Holland about positivity, life-changing treatment, lockdown, dealing with online trolls and looking forward to watching football again

Mairead Holland

Dermot Devlin has been honoured for being a positive role model and his commitment to disability rights

"I'M not really sure why I was nominated, but whatever happens, I feel I'm already a winner just to have reached this stage," says disabled activist Dermot Devlin when asked about his latest accolade.

And it's undoubtedly this type of modest but upbeat attitude that has contributed to the Co Tyrone man reaching the finals of the UK-wide National Diversity Awards.

The 41-year-old, who has a rare disease that means he has to use a wheelchair, is the only finalist from Northern Ireland in the 'Positive Role Model for Disability' category.

He has been shortlisted alongside seven others including Matt Hampson, an England rugby union player paralysed in a game at the age of 20, who now helps other young people injured through sport.

This isn't the first time Dermot's work has been recognised.

Last year, he was awarded the Bravery Award from Amnesty International UK in recognition of his human rights campaigning for disabled people.

One of six siblings, the Greencastle man was diagnosed at around 18 months old with Mucopolysaccharides Morquio, a genetic disease which restricts growth and breathing and can also lead to joint stiffness and other issues.

Dermot and his brother Niall, who also has the disease, are among just 108 people in the UK with it.

However, rather than let his disability define him, Dermot campaigns and advocates for other disabled people and has been instrumental in helping bring about positive practical change and, just as importantly, a shift in attitudes.

In 2009, he set up the disabled rights and disability blog My Way Access, which grew out of frustration at not being able to get answers to his questions and inaccessibility to premises.

As well as his 'day job' at Omagh Enterprise, where he works as an administrations officer, Dermot sits on a number of advisory groups.

He wasn't always so busy - but not through choice. In his 30s, as the disease worsened, Dermot found himself laid low with barely any energy.

But his life, along with others, was transformed five years ago by a new drug, Vimizim, which was approved following a long campaign in which the Co Tyrone man played a key role.

"The treatment has been fantastic," he says. "It has turned my life around. Before that, I used to go to work in the morning and come home sapped.

"I still enjoyed life but I couldn't do as much as I wanted to do. Now I have a lot more focus and concentration."

Dermot attends hospital one day a week for an infusion of the drug, which takes almost five hours to administer.

"It means giving up my Friday but it's worth it because it gives me the rest of the week back," he explains.

"I still have a lot of chronic pain which can flare up quite a bit but the main problem for me was the tiredness and that has improved so much."

And with his new lease of life, he has not wasted any time.

One of the services on his page is a list of businesses and organisations which are disability friendly.

"One of the issues for disabled people is that we have to forward plan if it's somewhere we're not familiar with - if I am going to Belfast I have to think, Where can I go that's accessible? Do they have the toilet facilities I need? What are the staff like?" he says.

Dermot Devlin, along with his brother Niall, is among only 108 people in the UK with Mucopolysaccharides Morquio, a rare genetic disease

As a member of Imtac NI - a committee of disabled and older people that advises the government on travel - Dermot is also hoping to take a few bus trips soon, and test out a new campaign he has worked on with Translink.

"In the past, if a disabled person wanted to get a bus, they would have had to phone and let Translink know 24 hours in advance. We didn't have the luxury of being spontaneous, but now we can just turn up like anybody else," he says.

Uneven surfaces, cobbled streets and street furniture are another nightmare for wheelchair users and, as vice-chair of Fermanagh and Omagh District Council's disability advisory group, Dermot works with the council to ensure disabled people are consulted before decisions are taken that could affect them.

Last year, during lockdown, he started training with CRAIC NI, a group which promotes inclusion, providing information to organisations on how to make their business attractive and accessible to disabled people.

"In terms of the Purple Pound, disabled people contribute £274 billion to the UK economy every year. I would say to the organisations and businesses out there, do you want a slice of the money we are willing and wanting to spend in your business?" he says.

As a clinically extremely vulnerable (CEV) person, Dermot is emerging slowly and cautiously from a personal Covid lockdown which spanned more than a year.

He admits he found it difficult, especially in the winter months.

"I was bubbling with my mum and dad and brother which made it a little bit easier," he explains.

"I appreciate there are a lot more people out there who wouldn't have had that luxury, who would have been on their own.

"It was difficult because I would be quite a sociable person, happiest when I'm out with my friends or helping people with disability issues.

"Over the winter months, I found myself retreating into myself again. It was only when I heard I was getting my first vaccine that I was able to see the light in the tunnel again and come out of my shell.

"My bubble has widened a little, and I am back in my own home again, but I am still very careful, especially now with the Delta variant around."

Dermot believes it is of the utmost importance that people who are able to take the vaccine take it, not only to protect themselves and their families but everybody else around them too, and that people should continue washing their hands, wearing masks and social distancing.

"I know people who are CEV and still afraid to leave their homes," he adds.

Over the years, Dermot has also found himself having to deal with online trolls, including a co-ordinated campaign from America from people who objected to his positivity towards his disability.

"I found that really hard at the time. Online abuse can be very hurtful and very painful. People don't realise it's a real person at the end of the screen," he says.

"Thanks to cognitive behavioural therapy and a good circle of friends I was able to pull through.

"Now I am a lot more confident in myself. I just shut them down before they get started too much.

"I also try to think where these people are coming from themselves, because nobody sets out to be a bully - hopefully not, anyway.

"They have maybe got issues going on in their own lives, so I try not to take it as a personal attack on me, but rather them lashing out.

"You need to take time out to yourself and realise those words are not going to stop you, they are not going to hurt you – if you do that, it's half the battle."

Outside work, Dermot loves 'cosplay', dressing up as his favourite characters from comic books, shows and films such as Game of Thrones, Ghostbusters and Back to the Future - even designing his wheelchair around them – and attending Comic Con shows and other festivals.

As a fan of 'cosplay', Dermot has turned his ingenuity to creating 'costumes' incorporating his wheelchair to celebrate Back to the Future and Game of Thrones

As a fan of 'cosplay', Dermot has turned his ingenuity to creating 'costumes' incorporating his wheelchair to celebrate Back to the Future and Game of Thrones

He also "clears his head" in the Sperrin Mountains and is a big GAA fan supporting local teams Greencastle and Sperrin Óg - as well as Tyrone, of course.

He hasn't ventured back to the football grounds yet - "I don't feel ready to go back and sit in crowds of that number" - but it's definitely on his list of many things that he is look forwarding to.

mywayaccess.com

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