Our colleague Alison Crawford on what life is like living with spina bifida Posted 21.10.2020 Article below published in the Belfast Telegraph on 20.10.2020 As spina bifida awareness week begins this Friday, Stephanie Bell (Belfast Telegraph) finds out what life is like for two people living with the condition. 'There are all kinds of opportunities out there' For Co Antrim woman Alison Crawford, using a wheelchair has opened up the world to her in a way that she wishes society would understand. Helping change attitudes to disabled people is something the Newtownabbey woman does for a living as a research officer with the charity Disability Action. The 38-year-old was born with spina bifida and had struggled to walk before getting a wheelchair at the age of 10. Alison is grateful to her parents Veronica and Alan for their positive attitude to her disability. She has one younger brother Gary (35). "Mum was told very bluntly at her first pregnancy scan that I had no spine which was a terrible shock," she says. "She then had her next scan with well-known gynaecologist Professor Jim Dornan, who was very positive and really reassured mum. "Mum was always quite practical in her attitude and her positivity really helped me too. "She fought for me to go to mainstream school and I was the only disabled child in my primary and secondary schools. I had a close-knit circle of friends who were very supportive. "I also got great support at the University of Ulster (Alison took a degree in literature and American studies and went on to study for a PhD in animation history and theory)." Embracing life and all its opportunities comes naturally to her and being in a wheelchair, she says, made it much easier. "I was able to travel to more places and to me, having my wheelchair was just fabulous," she says. "I was 11 when I went to the US for the first time with my family and I wouldn't have been able to see half of what I did without my wheelchair." A challenge associated with spina bifida which Alison had to face was to learn to self-catheterise at the age of eight. And around 15 years ago she started to experience almost constant pain from her hips down. "One of the things with spina bifida is that there isn't a lot known about how it affects you as you get older and sometimes the doctors are learning as you are too," she says. "I have this terrible burning pain from my hips down even though there is nothing physically wrong with me and I've just had to get used to it." Having the confidence to get out and enjoy life led to her meeting her husband, Chris Magill (32), 10 years ago. The couple married last month and live with their pets, black Labrador cross Molly (10) and three-year-old lurcher George. "I do ask myself, would I have had the confidence to get out there and do things if I didn't have my wheelchair and would I have met Chris?" she says. "We met in a bar on the Lisburn Road in Belfast. The two of us are heavy metal fans and have a good circle of friends from that. I think that being positive and getting out there is hugely important to building your life. "We also enjoy nature and I was able to get my wheelchair adapted so that I can go off-road on to rougher terrain and ramble a little bit. We recently had a mini honeymoon tour of the north coast and had a great time, and we also travel to music festivals in England and Europe to see the bands we enjoy." Alison is also chairperson of the Northern Ireland Spina Bifida Association, a voluntary role which she says allows her to help others with the condition to fulfil their dreams. She feels there is no reason why any child born with spina bifida can't lead a full and happy life. Naturally, it shocks and saddens her that 30% of parents opt to terminate their pregnancy when told their unborn baby has spina bifida. She says: "In the Sixties and Seventies Northern Ireland had the highest rate of spina bifida births in the whole of Europe. "Thankfully the rate is falling because of a greater awareness of taking folic acid before and during pregnancy. "Cases are being diagnosed before birth and 30% are being terminated still. People have their own views on things. I am pro-choice but I feel that it is fine to have a disability and that we have as many opportunities in life as anybody." While having a positive attitude, Alison nevertheless admits to moments growing up when she did wonder 'why me?'. She concedes: "I think if you don't have these moments then you're not human and I have had times when I asked 'why was this sent my way, why do I have to deal with it?' "I have always gone out there and got on with things which I think makes a difference. It is the people who can't get out who I feel need our support." Changing attitudes to disability is something she does by example and it remains a passion. "I think society doesn't see us (wheelchair users) as people who get out there, have lives and relationships and jobs," Alison adds. "There are all kinds of opportunities out there and it is about time there was a more positive attitude towards disabled people." Read the full Belfast Telegraph article - Co Armagh mum Donna Green marvels every day at the determination of her 11-year-old son Ryan, who refuses to allow limitations caused by spina bifida stop him from doing what he wants.