Belfast Telegraph

Home Life Features

'Northern Ireland is the safest place to be if you are an unborn baby who has a disability... and in terms of Brexit I'm glad Arlene Foster is holding firm to get the best deal'

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

Lord Shinkwin
Lord Shinkwin
Lord Shinkwin in the House of Lords
Lord Shinkwin giving a talk at the Brittle Bone Sociey
Lord Shinkwin presents the Brittle Bone Society Excellence Award to Dr Christine Burren with the help of Abbi Brown

By Lindy McDowell

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 was 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 visiting 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.

Q. You 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 17, 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, notwithstanding that, not withstanding the intra-uterine surgical advances that were reported in the media very recently, as a society we're saying: "Disability? Oh, we don't want any of that."

I do not take a position on abortion itself because, as a disabled human being I need to focus on the issue of disability equality. So I'm not judging anyone. I'm not condemning anyone. What I am highlighting is the disparity and the inequality and the medical profession's assumption that when they tell parents "your baby will have a disability" in the same breath they can say "but we can fit you in next week. You can just get rid of it".

And actually we've now got to the point where 90% of human beings diagnosed with Down's syndrome before birth are aborted, some as late as 36-37 weeks. That is a serious surgical procedure. It's not pleasant for anyone concerned. But the diagnosis of Down's is obviously enough for the medical profession and others involved to justify it to themselves.

Most people I think don't realise that some might be aborted right up to birth. But if more people were aware of that, I think they'd be pretty shocked.

Q. Foetal abnormalities could include things like cleft palate, isn't that right?

A. Yes. I had a cleft palate at birth. They said I'd never talk. They said that again after I had emergency neurosurgery to save my life. They were wrong on both counts. And you only have to open a magazine and you will find pictures of children with hare lip in adverts used to fundraise for charities saying: "Please help us to perform a relatively simple surgical procedure."

I really, really sympathise with parents who are told: "Your child has a disability. We can fit you in next week. A hare lip will really damage their chances. You wouldn't want that for your child would you?" I've been contacted by parents who say that even when they've decided they want to go ahead and have the baby at every subsequent appointment, and this is what they find really distressing, they've been told, "I've arranged for so and so to be available to speak to you" ie, about having an abortion.

I've even been told of situations where, after the birth, staff, midwives, have remonstrated with the mother and said: "Did you know about this? Did you have a diagnosis?" And it has reduced some mothers to tears just at the moment when they are at their most vulnerable and most in need of support.

Q. But it is a complex, difficult issue and there are parents who genuinely feel they can't bring a disabled child into the world.

A. Yes. And that's why I think parents need a lot more, and deserve a lot more, support. I've actually got a Bill, and there are two clauses. One is to equalise the cut-off point for abortion at 24 weeks for disabled and non-disabled human beings. The other is to provide parents on diagnosis with more balanced information and that that information should come from parental support/disability support groups and organisations managed by disabled people because I think it is so important that parents are allowed to consider all the options.

When parents who have had a diagnosis of Down's syndrome for their unborn baby actually get in touch with other parents whose children have Down's syndrome they feel very different from when they were given the very cold diagnosis in the hospital.

Q. But what about cases where the child is just not going to live?

A. As you say, it's incredibly complex. I would simply stress that I would not judge anyone for the decision that they make. What I am aware of is that there has been research in the States that shows that actually having an abortion doesn't make the grieving process any easier. That some women have said that being able to hold the child, being able to mourn was very important to them. But I do not judge.

Q. You're on record as saying that Northern Ireland is currently the safest place for a child diagnosed with disability before birth to be born.

A. Yes, it is. I was in the Republic the weekend before the (abortion) referendum. And I was astonished because in the space of 36 hours or so I secured coverage across all the media. And I thought to myself, I'm no one important, they've got loads of Irish commentators, politicians. But the reason why I hit the headlines was because they'd got no one else. No one else was talking about disability.

Fianna Fail and Fine Gael had agreed between them that they would support this referendum and so the implications for disabled human beings wasn't even touched on because they said the 12-week window, as I understood it, would apply to any unborn child so therefore disability discrimination is not an issue.

But actually it is because with the new screening technology, the non-invasive pregnancy test, you can have a diagnosis and get an abortion within the 12-week window. And of course, the main target for that, the main victims, are disabled human beings.

Q. Another key issue you've spoken on and are concerned about is Brexit. You're pro-Brexit, aren't you?

A. Yes. And I'm very grateful to the DUP, to Arlene Foster, for holding firm because I think that we are in danger of becoming so tired of the Brexit debate that we sleepwalk into an awful situation. I really, really hope that the DUP can find the courage and the resolve to insist that the people's vote of the referendum should be respected.

I think where there's a will, there's a way. I still believe that if we stand up to the unelected officials of Brussels we can avoid what can be a disastrous outcome which is a complete fudge where we're in a much worse position than we were before the referendum.

Q. Are you optimistic that will happen?

A. I would be very pessimistic about the long-term ramifications of a bad deal because I think in the UK, democracy is taken very much for granted by the Establishment. When you look at what's happening in Europe, in Italy, in Greece and now in Germany, countries are becoming increasingly unstable because the mainstream Establishment is simply not listening to the people.

I think that even though there will be short-term pain were we to leave on WTO terms, it would be a better deal because of the longer term gains of being able to strike our own free trade deals.

I think the backstop is a complete red herring concocted by the technocrats in Brussels and I think they are using it very, very cynically and very, very irresponsibly. And yes, I think that the Dublin government are using it too. And I think that's very unfortunate.

Belfast Telegraph


From Belfast Telegraph