Amongst other festive events that take place in October, such as Halloween and Diwali, October saw the annual celebration of Down syndrome awareness month. Hence, I interviewed actress, comedian and Down syndrome activist Sally Phillips, and her 15-year-old son Olly, who has Down syndrome asking them about why Down syndrome awareness is so important, and what you can do to help.
According to the Down syndrome Association, only 40,000 people in the UK have Down syndrome, which works out at 1 in 1,000 babies born every year. The majority of the time, Down syndrome is caused by trisomy 21 whereby the person has three copies of chromosome 21, instead of the usual two copies, in all cells. It can affect physical appearance and cognitive ability, as well as causing some health issues.
I interviewed Sally Phillips, asking her about her views on the stigma around Down syndrome and her experience with having a son with Down syndrome. I asked her about why there was such a strong stigma around Down Syndrome, and she said ‘there are very few people with Down Syndrome in the UK, meaning that there’s a lot of unground fear around what it means for a person and their family. And a child born with Down Syndrome today will have a completely different (and we hope much better) life than someone born in 1970 like me.’ Despite improving attitudes towards Down syndrome, there is still a huge amount of ignorance around the subject and the wider disabled community. Sally told me that ‘9 out of 10 people in the UK have never had a person with a disability in their home, and when you think that 1 in 5 people in the UK has some kind of disability, that’s pretty shocking’. We agreed that figures such as there strongly reaffirm the importance in such awareness months.
I asked her what common misconceptions of Down syndrome she wanted to dispel. She said she wanted to confirm that ‘they are not ill. Down syndrome is not a disease and it is not a tragedy. We find as a family that it’s more comic’. Additionally, she said, ‘they do not suffer from Down syndrome; they suffer from society’s attitude to Down syndrome. 99% of people with Down’s syndrome report being happy with their lives and 98% of families love their family member with Down syndrome (which is more than for the general population).
Sally has done a huge amount, advocating for the Down syndrome community. She made a documentary in 2016 on BBC2 called ‘A World Without Down’s’, educating the public on the subject of genetic screening, and how the very high termination rates of babies with Down syndrome after they have been screened, could in the future lead to a world without Down syndrome at all. She also touches on what life with Down syndrome is life, through various interviews with people who have it. It is an extraordinary documentary, which I would strongly recommend to everyone to help you learn more about Down syndrome. Sally also said ‘ I’m attached to quite a few charities and try to help them raise their profiles. Particularly Skylarks in Twickenham, Positive About Down syndrome, Down’s Ed and the brilliant Down syndrome Research Foundation’. It is clear that Sally does a lot to support the Down syndrome community, and you can too.
I then asked her for advice on what one can do to support Down syndrome awareness, and try and educate themselves on it. Sally said ‘befriend somebody with Down syndrome, it won’t be a drag. Buy a ticket to one of the inclusive theatre companies like Chicken Shed, and follow the careers of Sarah Gordy, Liam Bartlett and Tommy Jessop. Also, you can follow ‘Keep Positive About Down syndrome on Twitter, and help us to get the message out there on social media that Down syndrome is not something to be feared’.
Sally went on to say how many people think that people with Down syndrome don’t have a voice, and disabled activists often refer to the expression ‘Does he take sugar?’ as a shorthand for the albeit attitude that they are incapable of self-determination. Following on from this idea, we thought it would be appropriate if I interviewed her son (my cousin), Olly, to see what he thought about Down syndrome awareness and the current stigma around Down syndrome.
I started by asking him, ‘What is having Down syndrome like?’ to which his response was quite simply ‘happy’. Which suddenly contradicts a huge number of misconceptions about Down syndrome. I think that if you asked someone without Down syndrome how his or her life was, the answer would not be nearly as positive. So this was a reassuring start to the interview. However Olly did mention some of the things that he finds challenging with having Down syndrome, he said ‘it’s quite tough in school because I hate it when people shout at each other and fight and ‘sometimes I find it difficult to understand why people do bad things that make other people upset’. Olly featured in Sally’s documentary, so I asked him whether anything changed for him as a result of the documentary airing? He said that ‘he learnt a lot about Down syndrome as well and that ‘everyone in school was more kind and understanding to me’. Olly’s response only goes to show how much of an educational impact things like this can have. I then asked him what he would say to people as advice on how to act around people with Down syndrome to which he said ‘Just be normal to us, that’s what we want to be. We are just nice people and the same as you at the end of the day’. I thought that there were lots to be learnt from this heartwarming answer and that Olly’s response was something that lots of people with disabilities worldwide could resonate with.
Lastly, I asked Sally what the best thing about having a child with Down syndrome was. She said that ‘the best thing is the laughter. Olly seems to enjoy life so much more than the rest of us. He appreciates the little things. Every day he asks how I slept and how my day at work was. Life’s not always plain sailing, but it is interesting.’
So to conclude, having Down syndrome is not a tragedy, people that have it aren’t suffering, and as Olly said, they are ‘just nice people and the same as you at the end of the day’. Despite how fortunate Olly has been with the loving family and network of friends that support him every day, it is important that we eradicate the stigma formed around Down Syndrome, and educate people on the upsides of Down’s.
(For more information about Down syndrome, visit https://www.dsrf-uk.org )
By Emily Phillips - Lady Eleanor Holles
