BY Ian Dunn | December 21 | comments icon 8 COMMENTS     print icon print

8-INSPIRING-LIVES

Pride not prejudice

— IAN DUNN speaks to Lynn Murray, whose daughter, Rachel, has Down’s Syndrome, about some of the challenges she has faced as a mother who is dedicated to fighting for her daughter’s rights

In the year 2000, Lynn Murray of Edinburgh was pregnant with her fourth child. After her daughter Rachel was born, the doctor asked to see her and her husband. “He said ‘I have something to tell you and it may come as a bit of a shock’ and he told us that Rachel had Down’s Syndrome,” she said. “And afterwards I remember thinking I wish he’d been a bit happier about it. However, after talking to other parents, I realised he’d actually been very neutral about it and we’d had a much less negative experience than most people.”

Since then, Lynn Murray has been not only raising her daughter Rachel, now 12, but also fighting to make sure other people look right at her and treat her as a human being.

“Before, if I’d seen a parent with a Down’s Syndrome child, I would have felt sorry for them,” she said. “Now I wouldn’t. It’s not a bad experience, and I have had hang ups, I maybe still do. What I hope is that because Rachel goes to a mainstream school other people who know her won’t have the same issue.”

 

Disarming prejudice

Since having Rachel, Lynn says she has come to see her daughter as her own best weapon in disarming prejudice.

“She is very outgoing, she loves people, loves to be with people,” she said. “She has no inhibitions, she says hello to everyone in her school and she will go up to homeless people in the street and start talking to them. She puts me to shame because she just can’t discriminate against anyone.”

The large part of discrimination disabled people face, she believes, ‘is down to fear.’ “It’s fear of the unknown, when I was young special needs children were all sent away to special schools,” she said. “So before Rachel I didn’t know any disabled people so when she was born I had this irrational fear, that I couldn’t even explain.”

The fact Rachel is the youngest of her four children helped her to cope.

“If she’d been my first I might have been thinking ‘Oh God, what do I do,’” she said. “But by the time it’s your fourth, you know all kids have their flaws and their faults and there are no perfect children. She’ll have her issues but there are other problems she doesn’t have. I went to see her teacher recently and she said she never falls out with anybody and she wishes every child was like that. Because she’s not as self aware, things like jealously just don’t come naturally to Rachel.”

The rest of the Murray children have also quickly learned to love Rachel dearly.

“They are happy with her, she’s got a great sense of humour and she gives as good as she gets,” Lynn said. “She’s just their wee sister.”

 

Challenges

That is not to say there are not problems and challenges, and like most people with Down’s Syndrome, a congenital disorder caused by having an extra 21st chromosome, Rachel has recurrent health problems.

“She really benefits from modern medicine,” Lynn explained. “When she was one she had leukemia. Because she had Down’s Syndrome, 20 years ago she would have died and she almost did. Thankfully, the therapies have improved, she survived and you won’t know she had it.”

She also has ongoing problems with ‘her hearing, her height, her weight and her muscle tone, she has general health problems, and low immunity to things.’

“I think that’s the hardest thing,” Lynn said. “I’m quite good at spotting things but I am not a doctor and you’ve got to be on top of all of it.”

She also believes that a more holistic approach would help children with Down’s Syndrome more.

“The big phrase at the moment is early intervention,” she told the SCO. “For example, speech therapy is clinically proven to help with the development of people with Down’s Syndrome, but you will spend your life fighting to get it.”

She is particularly keen on speech therapy because it has helped Rachel communicate.

“If you can learn to speak, people think you are less disabled,” she said. “It is only recently we found out she had hearing problems which makes it harder for her to communicate.”

A recent incident illustrated that to Lynn all too clearly.

“The other day we were in the Gyle Centre, and we met a mum with a Down’s Syndrome’s boy who I know and an older man with Down’s Syndrome came up to us,” she said. “He didn’t have any speech and he hugged each of us. And it was kind of inappropriate hugging, but it was his only way of making contact. I couldn’t help but feel if he had he got the right support he might have been able to communicate better.”

That story illustrates the narrow margins people with Down’s Syndrome have.

“These years are so important to Rachel,” Lynn said. “When she is 26, she can’t decide, ‘oh I mucked up at school maybe I’ll go do a degree now.’ This is the shot she gets, there is no second chance. So you want to do the best for her, and help her fufill her potential because that is what you want for all your children.”

But she fears that the harder years may be ahead of her.

“We looking at high schools now and it is the first time I have felt some discrimination,” she said. “Because children with Down’s Syndrome tend not to go to mainstream schools, there is resistance to that. People say ‘oh this is a mega decision’ but the next one is leaving school and the decisions further along from that get bigger and harder, more difficult and less supported. These are years of some certainty, when she is at school. It is the decisions in five years that I am really dreading and people don’t understand that.”

 

Isolation

Lynn said it can be a lonely battle, fighting for what her daughter needs.

“You go into meetings when your kid goes to school, and there are teachers, therapists and people from the council, and you can get steamrollered because people don’t want the hassle, and you feel like nobody has your back,” she said. “You can say inclusion is the policy of the local authority, which it is and you almost get laughed at. Because I feel we should be looking at what’s best for Rachel and not just the path of least resistance.”

The hardest thing, she recalled, is when ‘people put it as if it is a kindness, when they talk in terms of Rachel’s happiness.’

“As if they could be more concerned about that than me,” she said.

She feels that society’s attitude towards people with disabilities is still very conflicted, a view informed by her 20-year involvement with the pro-life movement.

‘It’s schizophrenic,” she said. “You look at the Paralympics and Special Olympics and it’s ‘lets celebrate these people but only when they have done something,’ but it’s a struggle for them even to be born.

“If you look at the process of pregnancy, it is no wonder people have hang-ups about the disabled and we can’t banish that till we look properly at that process,” she said. “I think if women looked at their experience of screening, at best it is variable and I think there is a lot of very negative experiences especially if you have a Down’s Syndrome baby.”

 

Help in pregnancy

She believes these attitudes are locked in at the earliest stage when women’s pregnancies are scanned, as ‘any test is a stressful experience, and if the test is negative that stress doesn’t go away.’

“From the word go, the screening system fills pregnancy with fear,” she said. “That your pregnancy is about to be tested, just that language of testing, suggests you and your child can fail that test.”

She feels that many in the medical profession wrongly view abortion as the ‘cure’ for Down’s Syndrome.

“They would love to screen every pregnancy for Down’s Syndrome, and they are also investing more money in making those tests more effective. It’s not women who are asking for that. Whose benefit is it for?” she asked.

“In Scotland, they abort 30 babies per year who have tested positive for Down’s Syndrome, even disregarding the fact the tests are not always right, why don’t we forget about screening pregnancy and put that money towards helping those 30 babies?

She also feels that there is so much focus on testing it is neglecting other vital research.

“I understand there isn’t a cure,” she said. “But there are lots of things they could look into improving but all the money is going to testing. The focus is on ‘preventive medicine,’ which refers to taking folic acid but also includes things like screening and abortion. Now I think that is a redefinition of ‘preventative’ and ‘medicine’ and it must be challenged.”

She feels that by testing for disability our society is setting in place a mindset that views disability as a problem to be solved.

“There is a belief that they are solving a problem by terminating a baby who has Down’s Syndrome,” she said. “How do you think that feels to us who have those babies and are trying to bring them up as best we can? let alone to the people with Down’s Syndrome who grow up and read about all the tests being down to stop them being born?”

However she is not without hope and believes the 1990 change to the abortion act is something that can be repealed because ‘it is just discrimination.’

 

Hope

“I think things are taking off a bit around the world,” she said. “There’s a New Zealand group that has written to the International Criminal Court challenging the screening system there and plans for the same in Europe. And in Spain they have outlawed abortion on the grounds of disability, so it does feel a bit like the world is waking up to this. And I think the Paralympics did have a really positive impact, helping people understand that people with disabilities are not just people in a wheelchair, they are just people.”

Though these developments are encouraging for her as a mother and a campaigner, it is clear that what matters most to Lynn is Rachel’s future.

“Of course, the future is worrying,” she said. “But how many kids come out of high school and you say right ‘box ticked, potential fulfilled.’ Kids go in all sorts of different directions, no matter what you do. And actually I feel very blessed.

“It is like a well kept secret. As a parent you are part of this exclusive club nobody really knows about. Because she is just so happy and easy to be around. She will be what she is going to be, just like my other children. And I just want the best for her, maybe it is a bit harder for her, but it is the same journey.”

 

— ian@sconews.co.uk

 

Comments - 8 Responses

  1. Great article, well done. For those interested in the New Zealand action mentioned towards the end of the article, please visit the Saving Downs website http://www.savingdowns.com

  2. Adrian Gallacher says:

    Superb article, giving much food for thought, even for those who feels sympathy for those with disabilities. Thanks,

  3. “Pride not prejudice – SCO News” was quite pleasurable and educational!
    Within the present day world that’s really hard to deliver.
    Thanks a lot, Melba

  4. Ava Clark says:

    “Pride not prejudice–SCO News”. Its really very Great article. Thanks for sharing this informative and educational post.

  5. Very good article. It gives much food for thought. With so much competition in the present day world, we must know how to overcome our short comings and fight for our rights.

  6. Moore Ariana says:

    This is a very thought provoking article. I appreciate the mother’s support for her daughter. She has a never let go attitude which is required to lead a life in this competitive world. I pray God that everything turns out fine for her daughter.

  7. This post moved me from the core.I can empathise a mother’s concern and plight for her child.At the same time,I salute her courage for being so strong mentally all throughout for getting her daughter the justice,the rights she deserves.

  8. Ashley says:

    This article wrenched my heart reading Rachel and her mother Lynn’s long fight against the her disabilities,against the society and the prejudice.But as I went on reading,my mind beamed with poride and applaud for both of them for their undying spirit,perseverance and optimism towards life.This mother-daughter duo has set ideal example in front of society of combating the problems bravely than to run away from it.

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