As we continue our Proud to Be Me campaign and to raise awareness of Disability Pride Month, we had the pleasure of having a chat with member of our Resident Involvement Group and customer, Colin Hardwicke.
Colin gives us an insight into living with Muscular Dystrophy, and the challenges, the joys and the heartbreak he has faced as a gay man. Born in Wakefield, he is the youngest of three siblings and has lived his whole life in Pontefract. He’s a big advocate for supporting communities and volunteers on many forums and groups.
Colin is involved in making sure that customers are at the heart of what we do here at Vico Homes and we value his input, his openness and the experiences he brings to the table.
Read Colin’s powerful and inspiring story below.
“I was born in Manygates Hospital in Wakefield and have lived my whole life in different parts of Pontefract. I have two older sisters, Lisa lives with her partner Kevin and Mandy is married to her wife Emma, and they have son, Ruben.”
“Growing up was incredibly challenging at times. My mum devoted her life to giving me and my sisters the best upbringing she possibly could. Eventually my dad left following an affair, leaving my oldest sister to look after us when mum worked nightshifts. This made my mum the strong independent woman she is today and who I truly admire, though now she is older I think I have turned into the parent. We had the best holidays as a child once my dad left, that I fondly remember.”
“I think in terms of challenges, going through school and going into work as someone who had a disability, I found I was having to prove myself all the time. People would automatically make assumptions of what I could or couldn’t do, and I always proved that their assuming was wrong.”
“I loved my time at school. Even though I have a Muscular Dystrophy I still went to regular schools as I didn’t start using a wheelchair until my early 20s.I was always very involved at high school from volunteering whenever we were asked by teachers, to helping when events were happening. And something that I am very proud of is that I was voted ‘personality of the year’ in our final year by my peers.
“In terms of challenges, going through school and going into work as someone who had a disability, I found I was having to prove myself all the time. People would automatically make assumptions of what I could and couldn’t do, and I always proved their assuming was wrong. This all put me in good stead to be the strong-willed person that I am now at the age of 53.”
“I am a gay man, but it took me till I was 32 to be open publicly with this. I have always known I was different from a very young age but wasn’t sure why. My first memory of feeling like I liked boys in a different way was when I got my first girlfriend called Joanne, think I was about nine years old and my friends egged me on to kiss her, but it wasn’t for me, and soon our romance was over.
“When I was 11, I had a first kiss with a boy, my friend Joseph. We went to his house, and I remember no-one was home, we were watching telly and then he said something like “have you ever kissed a boy?”, I replied “no, but I always wondered what it was like”. I remember vividly that he came over and kissed me and it was like fireworks going off, it felt so right. Through high school I had various encounters and even when I left school, but to the outside world and my family I was still straight."
“It turns out my mum always knew but felt it was my place to tell her when I was ready. It was such a bigger issue in my own head than it was for her or anyone else who found or who I told.”
“Internet dating came along, and I set up a profile and chatted to lots of people and was starting to feel that my dream of meeting someone could become a reality. After about six months of talking to John, who was also from Pontefract, we decided to meet. He did turn out to be my perfect man."
“One day when I was home my mum came round. I had such butterflies in my stomach, but I knew I had to tell her. I said, “I’ve got something to tell you, and there is good news and bad news”, she asked, “what’s the good news?” and I replied, ”I’ve met someone” and she asked, “what’s the bad news, is it a guy?” and I said yes. . It turns out she always knew but felt it was my place to tell her when I was ready. It was such a bigger issue in my own head than it was for her or anyone else who found or who I told.”
“John moved in with me, I had an amazing life with him travelling the world from New York to Australia and everything in between. Sadly, in 2009 he was diagnosed with a Glioblastoma (brain tumour) Grade 4 and needed emergency surgery. After this he had an aggressive course of Radiotherapy every day for seven weeks. Sadly his tumour grew during treatment, and there was no further treatment that would help, so he became a palliative cancer patient."
“Towards the end we spent time at the Prince of Wales Hospice, they were brilliant with him and kept him pain free. Sadly, he lost his battle 10 months after diagnosis on 21 August 2010. To this day my heart aches, you may see me smile or laugh, but I’m tearing up inside."
“With regards to telling people that I am a gay man, I don’t tell people unless they ask or make a presumption of my sexuality. I am very proud of who I am. I do think that telling people can break down the awkwardness of wondering, but personally I have never felt the need to tell anyone that I am gay, – it’s none of their business – if that makes sense."
“As a busy person I enjoy all the volunteering opportunities that come my way. I do like to show people that no matter what your colour, creed, ability, disability, sexuality or religion, you can get involved and grow your confidence and ability, plus also become part of a marginalised community.”
“Some of the benefits of having inclusive and equal representation, especially in the community and housing, are that when discussions or activities are happening, then a more balanced view and decision will usually be the result if everyone has chance to give their views and ideas.”
“I now do lots of voluntary work, my mum gave me a great work ethic. Yes, I am on disability benefit, but this is not free money. Volunteering in my community and further afield, making contributions and making people smile is my way of earning my benefit.”
Colin is involved in many groups throughout the community, including being Chair of the Barracks Community Association and the Communities Together Forum, and a member of the Service User Group at Wakefield Wheelchair Services, the Vico Homes Resident Involvement Monitoring Group, and the Patient Participation Group at his GP practice.
Having Muscular Dystrophy, Colin faces challenges every day. He also had a tracheostomy 10 years ago after getting Pneumonia and becoming incredibly poorly.
Colin said: “The doctors gave me and my family two options. The first was to remain on the course of action dealing with the infection with antibiotics and I probably wouldn’t make it, the second was to give me a tracheostomy which would give me a better chance of survival."
“I couldn’t speak at first as the tracheostomy that I had been initially given had a ‘cuff’, this was so the doctors and nurses could control what went in and out of my throat, but for the first few weeks the cuff remained inflated which meant I wasn’t even able to speak, it was at this point I realised I may never speak again which for me was scary as I couldn’t rely on my body, but always thought I would have my voice."
“They let down the cuff before visiting was allowed, then at 10am when they allowed people in my mum was waiting as she did each and every day while I was in hospital, she came in and as she came to my bed I simply said “hello mum”. At this point she cried as she never believed I would speak again, not only did she cry but so did the Physiotherapist, Speech Therapist and nurses.”
“It was very gradual to learn to eat and drink again and it was three months in intensive care. It was explained to me that because I have a ventilator and require ad-hoc lifesaving suctioning to clear my lungs, I would have to have 24/7 care and support in my life. At first this took a lot of getting my head around because it meant my privacy, independence, my life as I knew it was all gone and I would lose control, but I quickly realised that ‘I’m here, I’m alive’ and it meant I could go home. I think now I overcome daily challenges by having a 24/7 care team in place and yes, I still find alternative ways of doing things, I also have a second pair of hands should I need them.”
Colin is passionate about representing marginalised groups and works with in our communities, and with our teams, to make things happen.
He said: “I always feel lucky that I live in a country where there are rules and safeguarding to make places accessible and I don’t have to fight so much anymore for accessibility. Though if somewhere has tried to make more access but it’s not quite right, then I do feel that I need to give them suggestion of how things can be improved. This is usually because an able-bodied person has usually come up with the idea, and as they know best what works they haven’t run it someone who would be using it. If anything, this is the part that frustrates me most."
“I think that Vico Homes has an excellent understanding of supporting marginalised groups, of course nothing is 100% perfect, but if there has been anything identified as an issue then it is soon recognised and a solution found, the solution may not happen or immediately happen, but it is sorted as soon as is allowed."
“For the last two years I have been given the opportunity to hold the position of Chairperson on the Communities Together Forum, this was made possible by some of the resident involvement team, John Scarr and Jill Ambler, obtaining assistive technology, a microphone and stand, for me to use as my voice is very quiet due to my tracheostomy. Without this assistive technology it would not have been possible for me to do the role I do at forum meetings."
“I feel Vico Homes colleagues are extremely approachable no matter who you need to approach, right up to Chief Executive, no one’s door is closed.”
“My ambitions for the future are to be happy and to be more involved in volunteering in whatever guise that may be. I’d love to travel more though I’m not sure where I would like to go."
“A dream would be to find love, settle down and get married. Sadly, the gay world is a cruel place so I cannot ever see this happening with my health conditions. I know people will say there is someone out there, I’ve just got to find him - sadly I think I did, and he is no longer here.”