Jo Gideon – 2023 Speech on World Down Syndrome Day

The speech made by Jo Gideon, the Conservative MP for Stoke-on-Trent Central, in the House of Commons on 23 March 2023.

First, I thank my right hon. Friend the Member for North Somerset (Dr Fox) for securing the debate and for all the work he did to ensure the Down Syndrome Act 2022 became law.

During our lifetime, there has been a significant change in attitude towards Down syndrome. Undoubtedly, there is still more that can be done to improve the quality of life and opportunities of people with Down syndrome, but as we mark the 18th anniversary of the first World Down Syndrome Day, we should not forget the progress that has been made in understanding the condition and supporting those with Down syndrome to be treated fairly so they are able to live full and productive lives.

I speak with personal experience. My father had an elder brother, Donald, who had Down syndrome. I was only told of his existence when I was 27 years old and pregnant with my second child. Donald died in 1946, aged about 25. He spent all his life in an institution, which was standard practice at the time. My father did not talk about his brother. He found it too painful. My mother explained to me that when my father was a small child, my grandmother had taken him with her every month to visit his brother in the institution and the experience had traumatised him.

When I spoke during the Down Syndrome Bill debate last year, I referenced the BBC series “Call the Midwife”, which documented attitudes towards Down syndrome and how they started changing in the 1950s and 1960s as people with Down syndrome were able to take an active part in their communities. Not only have attitudes changed, but life expectancy has increased dramatically in recent decades from 25 years in the 1900s to 60 years today. Medical science has advanced and people can live extremely healthy and long lives, and make a great contribution to our society.

I am incredibly grateful for this opportunity to celebrate the achievements and contributions of people with Down syndrome to their local communities and to our society as a whole.

Jim Shannon (Strangford) (DUP)

I congratulate the right hon. Member for North Somerset (Dr Fox) on securing the debate. We are all encouraged by the situation. What comes to my mind is a young gentleman called James Martin, the 31-year-old who starred in the roaring success, “An Irish Goodbye”. He has gone from working in Starbucks to living his dream by winning a globally recognised award. Most importantly, he has never let his disability get in the way of goals and achievement. Does the hon. Lady agree that James is a true role model to all individuals out there who feel that society restrains them due to their disability, and reminds them that the world is their oyster—or in this case, their Oscar?

Jo Gideon

I thank the hon. Gentleman for his intervention. He is absolutely correct.

In Stoke, the Stoke and Staffordshire Downs Syndrome Social Group was set up in 2016 by a family in my constituency after their son was born with Down syndrome and the couple walked away from hospital with just a factsheet about the disorder. Today, the group meets regularly in Birches Head and is making a difference to the lives of more than 50 families by organising regular trips and activities, as well as supporting families emotionally and connecting them with wider support groups.

I would also like to highlight the great WorkFit programme for its role in making workplaces more inclusive. WorkFit is an employment programme that matches places and supports individuals with Down syndrome into work, with more than 1,000 individuals successfully accessing the service to date. In my constituency of Stoke-on-Trent Central, I was delighted to hear that the programme supported Grace into her role at Dunelm distribution centre, where she works dealing with returns from customers. She works two days a week and really enjoys being part of a great team who are very supportive. She uses her computer skills to process returns from customers and is very proud of her job.

Last week’s Budget outlined ways in which we would like to see a greater proportion of working-age people in employment, with a specific emphasis on supporting disabled people into work. One thing I would like to see is an improvement in ensuring that public transport services are available for travelling to and from work, so that a lack of access is not a barrier to that aim. Indeed, while it is wonderful to hear stories like Grace’s, according to the Down’s Syndrome Association, people with Down syndrome often face barriers and prejudice, lack of opportunities, low expectations, stereotyping and other negative attitudes. A study by Mencap found that 62% of adults with learning disabilities in the UK want to work, but only 6% have a paid job.

Everyone should have the right to work. People who have Down syndrome want to work for the same reasons as everyone else: to earn their own money, learn new skills, meet new people, feel valued, contribute to society, and have the chance to be more independent. Work is important for so many reasons and is a key part of our personal ambitions. For employers and their workforce, being equipped with the knowledge and understanding of how to better support a colleague with the condition is at the heart of the matter. In fact, it is key to achieving an inclusive work environment.

The same goes for education. The majority of children with disabilities in developing countries are currently out of school, while many of those enrolled are not in learning. To ensure that all children have access to quality education, education policies and practices must be inclusive of all learners, encourage the full participation of all, and promote diversity as a resource rather than as an obstacle. I was listening to an interview with a teacher recently, who said that she had seen such a difference in her class after moving from retrospectively altering her lesson plans for children in the class with Down syndrome, to thinking about how she can make a plan that includes the needs of all her pupils from the beginning. When we think about successful inclusion, it is about how are we supporting teachers to include and value everyone from the start, as opposed to adapting and modifying in retrospect.

The theme of this year’s World Down Syndrome Day is “With Us Not For Us”. I think that reflects my point well: a move from the outdated charity model of disability to working with others to treat them fairly so that they have the same opportunities as everyone else.

Karen Bradley (Staffordshire Moorlands) (Con)

Mr Deputy Speaker, I hope you will forgive me, but my constituent Ed Daly is in the Public Gallery with his mum, Jane. They spoke at the event on Tuesday in Parliament and they are fantastic advocates for this cause. Everything my hon. Friend says absolutely sums up what they have been saying to me. Will she, as I do, pay tribute to them?

Jo Gideon

I absolutely do pay tribute to them. I cannot see them in the Public Gallery, but it is wonderful that they are here to listen to the debate and to hear all the support there is for them in the House.

Support in decision making is really good. We all need help from people who know us and want the best for us. But people should have the right to make the final decision, the right to dignity and individuality, and the right to be in control of their lives.