Down Syndrome Awareness Month

Rachael Maskell Excerpts

Thursday 22nd October 2020 Commons Chamber

[Rachael Maskell (York Central) (Lab/Co-op)]

I am grateful to the hon. Member for securing this debate, having worked with people with Down’s syndrome for many years. I put on the record my huge gratitude to the Once Seen theatre company in York, where people with Down’s syndrome act. Their acting is so powerful and so moving, because it is about life experience. Does she agree that we need to put on a platform so much of the talent that people with Down’s syndrome have?

[Dr Cameron]

Absolutely. I am thankful for that intervention, which exemplifies our debate and the change in the narrative that all of us across this House wish to see. We should be promoting the excellent work of those individuals and groups with Down’s syndrome who are achieving so much in society.

Up About Down is a campaign run by the Windsor Essex Down Syndrome Association, a fantastic charity that has being raising awareness about Down’s syndrome through positive and accurate information since it was founded in 1990. It is all about changing the narrative surrounding Down’s syndrome; it is about looking beyond medical prognoses and seeing the individual stories and successes of individuals with Down’s syndrome who live happy and fulfilled lives and who are crucial contributors to local communities, economies and industries. It is absolutely in that spirit that I bring this debate before the House.

In 2019, an article was published that caught my eye, entitled “10 brilliant breakthroughs by people with Down Syndrome”. It highlighted Zack Gottsagen, a theatre major graduate of the Dreyfoos School of the Arts who starred in

“a modern Mark Twain style adventure story, The Peanut Butter Falcon, which tells the story of Zak…a young man with Down syndrome, who runs away from a residential nursing home to follow his dream of attending the professional wrestling school of his idol”.

The article also highlighted Heba Atef, who

“became the first-ever Egyptian flight attendant with Down syndrome to embark on a special flight from Cairo to Khartoum…the ‘Journey of Humanity’ took place under the sponsorship of the UN International Committee and was specifically tailored for people with special needs.”

The article notes that the Swindon Advertiser reports that

“a scaffolder living with Down’s syndrome was named Britain’s number one apprentice. His boss, the owner of Coles Scaffolding company Martyn Coles, said Todd had great determination. ‘He comes in every day and proves people wrong. Winning the award just shows he can do it.’”

Emmett Kyoshi, a teenage artist living with Down’s syndrome in Chicago, hosted his third art exhibition in 2019,

“showing the world that the extra chromosome he was born with is anything but a disability.”

Then there are Madeline Stuart—the world’s first catwalk model with Down’s syndrome—and Francesca Rausi, who have been credited for proving society’s perception of beauty wrong. They had the opportunity of walking at New York Fashion Week and meeting some of Hollywood’s biggest stars; again, they changed the narrative.

Closer to home, Positive about Down Syndrome told me about Tom, who lives in London and has two part-time jobs as a barman and catering assistant and is also an award-winning weightlifter; Bethany who works for West Mercia police; and Hayley from Essex, who loves singing and acting and is part of a drama group performing at the London Palladium. These few accounts represent the stories of so many: those students with Down’s syndrome who are in college or university; those who have jobs and hobbies; those who are moving home, winning awards, falling in love, getting married and achieving great things.

For each of these stories, there are also children who have dreams and aspirations. I heard about Rebecca, who wants to perform on stage; Ben, who wants to be a postman; Jessica, who wants to be a pop star; Jack, who wants to play football for Nottingham Forest or Manchester United; Hollie, who wants to be a vet; James, who wants to be a police officer; and Samantha, who wants to be a make-up artist. I am sure that I speak for every parent when I say that we support and absolutely share in the dreams of our children every single day.

A sense of fulfilment and purpose that people with Down’s syndrome have from their work is a common thread connecting many of the accounts that I have mentioned. With that in mind, I draw particular attention to the work of the Down’s Syndrome Association and the importance of its WorkFit scheme. The WorkFit scheme was set up to train and assess employers who want to include those with Down’s syndrome in their workforce. All employers registered with WorkFit receive training, which includes their duties under the Equality Act 2010, and practical advice on how to make reasonable adjustments. The Down’s Syndrome Association is in constant dialogue with companies and organisations that have employees placed with them through WorkFit, to answer any queries they may have, and to work through any challenging situations. The programme was set up in December 2011, and to date it has placed 416 individuals with Down’s syndrome in a range of full-time, part-time and volunteer roles, as well as in adapted internships.

In recent weeks the Government announced the kickstart scheme, and I want to ask the Minister whether young people with learning disabilities, or disabilities, could perhaps be further supported through that scheme, or through an internship or apprenticeship. The excellent Speaker’s internship scheme for people with disabilities was developed in 2016, and perhaps there is more that hon. Members could do to support the training, inclusion, skilling and work of those who have Down’s syndrome.

I am delighted to chair the new all-party group for inclusive entrepreneurship, which was established to remove barriers and raise the profile of entrepreneurs with protected characteristics, particularly disabilities. We must also change the narrative more broadly from disability to ability, and from being solely about employees to people having the potential to become employers. Will the Minister consult colleagues in government, and find out whether there are particular supports and schemes for which those with disabilities can perhaps be given funding or additional support for adaptations, so that they can start their own businesses with their skills, talents and abilities?

A study by Mencap found that 62% of adults with learning disabilities in the UK want to work, although only 6% have a paid job. We need to address that, and we must all play our role in our constituencies, and by working across the House and across parties, to ensure an inclusive employment programme for everyone across the UK. In this time of covid a recession could occur, and many jobs are already at risk. We would not wish one of the outcomes of covid to be a further tragic impact on those with disabilities.

Government mantras of “building back better” and “levelling up” can and should include people with disabilities and Down’s syndrome, making every aspect of society richly diverse and productive. I will conclude with a quote from a young lady, Kate Powell, which was provided to me by the Down’s Syndrome Association:

“Being a person with Down’s Syndrome makes me proud. I am a person to make a difference to a lot of people. That’s me. We may find things difficult, everyone does. We should tell people about Down’s Syndrome—the more people the better. Being a person with Down’s Syndrome I can do anything in life. We may need help to do the things we want to do in life. It is good to see people with Down’s Syndrome achieving their dreams. That’s my dream.”

That, Madam Deputy Speaker, should represent all our dreams.

--- Later in debate ---

[Rachael Maskell]

I appreciate that this is a really sensitive topic, but we know that coming into the world is a real challenge for somebody with Down’s syndrome. Will the Minister go away and look again at the conversations that are had with parents who are diagnosed in pregnancy with somebody with Down’s syndrome and see how we can change that conversation, so that people can understand the positivity of bringing up a child and raising someone into adulthood with Down’s syndrome?

[Helen Whately]

The hon. Member makes a really important point. It is clearly a very difficult and sensitive topic, but it is absolutely the case that if, during pregnancy, any abnormality is detected or suspected there should at no stage be any bias towards abortion, which is what, as I understand it, she is referring to. I want to make that absolutely clear. It must be the case that all health and care staff involved in the care of a woman or a couple who might be considering the termination of a pregnancy must adopt a non-directive, non-judgmental and supportive approach. That absolutely should be the case throughout our health system. Should anyone experience anything different and find that that is not the case, they should raise it, because women and couples should be supported in a positive way so that they can make the right choice for them. I am choosing my words carefully given that this is a very sensitive topic.

While I have the opportunity, I want to talk briefly about the importance of the Oliver McGowan mandatory training in learning disability and autism, which the Government have committed to rolling out to make sure that all health and social care staff receive training in learning disabilities and autism. That is really important to make sure that people with those conditions get the right and appropriate care when they are in the health and care system, including, I should say, for end-of-life care, making sure that do not attempt CPR—cardiopulmonary resuscitation—orders are used appropriately.

In the light of the pandemic, one thing that has been raised with me, particularly for those who are caring for those with disabilities, is the importance of day services and respite services. I have been working really hard, including with the Social Care Institute for Excellence, on guidance to support the reopening of day services and to encourage local authorities to make sure that those are reopened.

To conclude before we are out of time, I am so glad that we have had this debate and been able to talk about the contribution that those with Down’s syndrome make to our society, and, to use a phrase from the excellent speech by the hon. Member for East Kilbride, Strathaven and Lesmahagow, to have made our contribution to changing the narrative. It is crucial that we should celebrate the achievements and contributions of those with Down’s syndrome to our society, so we have been and are taking action to support those with disabilities, including Down’s syndrome, but I believe that we can always do more and go further. So I say, let’s do that. Let’s do more and go further to support people with Down’s syndrome to achieve their dreams.

Question put and agreed to.