Lord Shinkwin: why NI is safe st place for an unborn baby with a disability

Born with brittle bone disease, disability rights campaigner Lord Shinkwin’s fierce determination to fight prejudice is driven by personal experience

Lord Kevin Shinkwin (Baron Shinkwin) is one of the UK’s foremost campaigners for the rights of the disabled. In 2015, at the age of 44, he was introduced to the Lords, where he sits as a Conservative. Previously he’d worked in the voluntary sector. As a peer he has used his position to work tirelessly to highlight disability equality issues.

A man of enormous courage and principle, his understanding of the challenges the disabled face comes from personal experience. Born with brittle bone disease, he spent much of his childhood in hospital. Although he stresses he does not take a position on abortion itself, he describes Britain’s abortion laws — which allow abortions for foetal abnormality after the 24-week deadline — as “a licence to kill for the crime of being disabled”.

Here he talks about the prejudice still faced by disabled people. And he pays tribute to the loving parents and the brilliant doctor who ensured that he was not denied opportunities. “I was very blessed to be surrounded by brilliance, by love and by, particularly from my mum, a culture of aspiration that disabled people are still denied in many cases.” Q Shinkwin — that’s an unusual name. Where do your family come from originally?

A It’s actually from the Republic of Ireland. It’s the Irish version of the Welsh name Jenkins. My family came from Ireland relatively recently, within the last few generations.

Q Your dad John taught physics at Ratcliffe College (the well-known independent Catholic school in Leicester). A He was head of science. And my mum Maggie was on the staff as well. It ended up that I went to private school because I was in fact chucked out of the state system because of my disability. I got a scholarship and my parents were on the staff so they didn’t actually have to pay anything until I was in the sixth form, and even then it was much reduced.

It wasn’t because we were rich that I was at the school. It was because the doctors had said to my parents: “That boy has to carry on walking.” And at the state schools in the UK, the main man said: “We want him in his chair. He can’t be allowed to walk in the school.” And so my poor parents had to make the choice. And they made huge sacrifices for me to ensure I got the education I got. Without the education — because we’re talking about the 1970s/1980s — I just wouldn’t have had any opportunities at all.

Q You were diagnosed at birth with osteogenesis imperfecta (brittle bone disease). How difficult was your childhood?

A I was born with a broken leg, which is how they knew. Difficult? Yeah, it was. I spent much of the first 10 years of my life in a hospital bed or in plaster. I had over 40 fractures in that period, mainly of my legs. There was one year when I spent both my birthday, which is in June, and Christmas in traction on the children’s ward. My mum was amazing. There wasn’t a day that would pass when she wouldn’t come in and spend time with me by my bed.

Q How did you cope with that as a young boy?

A I truly love my mum and the way that she brought me up as a little boy whose legs were broke but there nothing else that was different. I mean, there was. But she didn’t say: “Oh, you’re disabled. You’ve got a disability.” She just said: “You’re going to go back to school and you’re going to do this and you’re going to do that.”

I was also helped by developing an amazingly vivid imagination because I was trapped in a hospital bed 24 hours a day, seven days a week for three months on end sometimes. So my mind took myself way out of the bed, out of the ward.

It was great at the time but it does mean that when I went to Auschwitz-Birkenau earlier this year, because of that vivid imagination, it was incredibly traumatic because I was able to, sadly, visualise what had happened there in a way that I rather wish I hadn’t been able to do. Q The brilliant Jewish doctor who did so much for you had fled the Nazis as a child, hadn’t he? A Hanus Weisl was my orthopaedic surgeon from birth to about 13. He and his mother had escaped from Prague on the last train out in June 1939 before the Nazis closed the borders in Czechoslovakia. Not one of the relatives who came to wave them off that day survived the Holocaust.

His memory is both a terrific and terrible inspiration to me to combat anti-Semitism, to acknowledge it for what it is, which is a form of racism, and to honour the memory of all those who were murdered in the Holocaust.

Q You were lucky in some respects in that you were surrounded by so many brilliant people — your parents and Dr Weisl — who gave you such opportunities because, as you say, in the 1970s/80s there was such prejudice against disabled people.

A I completely agree. It was a different time zone. I remember my mum vis- iting what they called a “special school” at that time and sometime later saying: “I had to make the choice there and then to send you elsewhere because the headmaster, when he was showing me around, boasted that last year one of his students got a C in one O-level.”

Because my mum was a teacher she knew what that actually meant in terms of opportunities. Minimal. So yes, that’s absolutely right. I was very blessed to be surrounded by brilliance, by love and by — particularly from my mum — a culture of aspiration that disabled people are still denied in many cases.

Q How did your fellow pupils treat you at school? Was it tough?

A It was tough. Was it tough for them? I don’t know. I think it was tough in that young children can be very kind but they can also be very cruel. And I stood out by a mile. There was a certain amount of hurtful behaviour but I’m sure I gave as good as I got.

QYou did politics at university?

A Yes. I went to the University of Hull and I had a brilliant time. My third year was spent working for an MP in London as part of the course and that really set me up for my career later working in the public affairs sector, predominantly for charities.

It was absolutely fascinating, and in fact my tutor from Hull is in the House of Lords with me. He’s a fellow member of the House of Lords and he was a supporter when I took my oath on November 7, 2015. I was absolutely honoured to be asked by David Cameron and I’m extremely grateful to him for the opportunity he’s given me. Q Do you think it is easier for disabled children today in terms of education? A Yes. Thank goodness. Much, much easier. I would give credit where it’s due, that is down to both Conservatives and Labour through the legislation that was introduced since 1995.

But my concern is that there still is a culture of low aspiration. There’s still a long way to go in terms of why can’t disabled people reach the top of their profession.

And how can government, and society which would benefit if that happened, how can they support them? They can go to school, they can excel. But what about when they come to Belfast? When they come to London or Leeds or Sheffield? How do they get around? How do they find work? How do they get accessible accommodation? We don’t seem to have addressed those points and yet, if you took them away from non-disabled people there’d be an outcry. The assumption is that they have accommodation they can use, that they can get to and from work — so what’s the difference with disabled people?

It is incredible how so many shops, so many pubs are still inaccessible. I find it really quite dispiriting that people think they can just get away with it — that it’s acceptable when, of course, it’s the opposite.

I hope that as society ages and people and their families are more affected by disability, they will be more robust in pointing out to businesses: “Hang on a minute, how do you expect us to be customers when we can’t actually go in to your pub or shop or restaurant?”

Q Assistive technology is changing things in respect of job opportunities and so on, isn’t it?

A Yes. I totally agree. But I would say that there’s no substitute for attitudinal change. My experience of people is generally really positive. They would like to help if they can.

Q You have been very vocal about the disparity between the rules for abortion in general, where it is permitted up to 24 weeks, and in cases of foetal abnormality where it is permitted up to birth.

A Absolutely. The statistics are really frightening and they are moving in one direction and they are moving very fast. The irony is that someone like me with my condition would now be treated from the moment of birth and have a far better prospect; my life chances would be transformed. And yet, notwas