Community – Trudy

I know I haven’t posted for a while and Trudy has started school so there is lots to say but, as usual, I am trying to navigate the political tightrope which is having a daughter with a disability in mainstream.

Nevertheless, I went to see a performance last night. It was a great performance about Home & Away and Down’s Syndrome and I have to tell you about it.

I wasn’t sure what I was expecting. A woman with Down’s Syndrome had written and was performing her play at the Edinburgh International Festival. I so badly wanted this to be a show which paraded acting talents and didn’t focus solely on disability and it did, in spades.

But it did not hide from the fact that the writer and performers had Down’s Syndrome. It celebrated what Down’s Syndrome has to offer. There was Julia, who knew how to command an audience with presence and confidence, Josh who really knew how to dance and others in her entourage who spoke well, painted, who had understood the true reason we are all here, to love and be loved and, above all, to have fun doing it!

It reminded me of an incredible cafe in Ilkley, West Yorkshire which I visited when Trudy was just born. This is a cafe run by adults with learning disabilities called ‘Outside The Box’. The great selling point of this cafe is that everyone talks to each other! You will get to know the people sitting on the table next to you. There is no judgement and social norms seem to be quietly set aside whilst we engage with real people.

This was the same with the theatre. We were invited to participate and I could sense everyone’s surge of fear as Julia asked people to come up to the stage. But there was no judgement, no expectation. Julia herself forgot her lines occasionally, but she accepted her stumble and didn’t judge herself for it. That gave us all hope that we could do whatever we felt we wanted to do.

So I went to find the cast, to tell them that they were utterly inspiring. Julia, in her show, talks about two hospitals in Australia that were shut down the year she was born. These hospitals entrapped adults like her and treated them like animals. This backdrop has affected us all and makes us fight harder, grateful for the extended kindness to include our young ones in life.

But Trudy won’t know any of this. She will just see people like Julia being part of the festival on her own merit and not because of her disability. She will see people with Down’s Syndrome on the TV, on radio and in jobs and expectations for her will change.

I will be eternally grateful for people like Julia who push and challenge boundaries every day. It is much more than I can ever do writing my blog so grateful, as ever, for your reading this but please go out and see shows like these. You will have a fantastic night out!

Aug 27, 2022 by trudyscrumptious15 Categories: Down's SyndromeTags: ASN, Community, Difference, Disability, Discrimination, Down Syndrome, Down's Syndrome, EIF, Inclusion, InclusionMatters, Mainstreaming Leave a comment

Almost four years ago, my friends and I decided to publish a book. It started with an innocent conversation in our local bar about a really frustrating book I had just read to Patrick, to help him come to terms with having a sister with Down’s Syndrome. I won’t mention the book to protect the identity of the author, but it was negative despite an overall positive message. The father was in tears because their baby had DS, the sister thought she would never be able to do anything with them, you get the picture. Instead of reassuring Patrick, it sparked a hundred questions that, at the time, I was not ready to answer.

My friends and I talked about a book which would encourage children not to fear difference as it is this fear which has led to so many examples of discrimination in adults. Bridget (writer and illustrator) and I had worked with people with learning disabilities of various kinds, and had experienced firsthand the type of injustice which exists because people are too quick to judge. As parents, we have also experienced the looks and the sideways glances, the uncomfortable questions. We talked about a book which accepted every stage of development. If Trudy wasn’t walking yet, it was okay. She’d get there. If she wasn’t talking, we were all learning to sign to help her on her way.

Bridget went away and wrote a poem which encapsulated everything we wanted to say. It would educate, inform, give top tips for how to explain DS to young children but, above all, present life as normal. We needed photos because we didn’t want a caricature of a child with DS taking away the authenticity of the poem. Jo (photographer) took photos of Patrick and Trudy. We spent many an afternoon trying to get them in the right position! Bridget has then spent the last few years illustrating the poem, in spite of a global pandemic and home-schooling, with beautiful scenes of Portobello, Edinburgh where our children spent the first few years of their lives.

Portobello was the town that welcomed us and took us in. It was where Trudy was born, where a good friend looked after Patrick whilst I went to the hospital with premature labour pains, only to give birth a couple of days later. It was the place that surrounded us with offers of help as we juggled life in hospital. It supported us gently as we got used to having a child who developed so slowly we didn’t know whether she would ever walk or talk. I have so many memories of Trudy shuffling up and down the prom at Portobello before she could walk, exploring the sand in the only way our little sensory being can do and dancing her heart out in her heavy-soled Piedro boots to the live music at the Big Beach Busk.

It seems perfectly fitting that this book was written and illustrated in this place where so much acceptance happened, where we learned that support can take many forms; from the lady in the jewellery shop, the man in the grocery store, Bob the butcher and the library, to name but a few. They know who they are.

So, once again, our community are coming to our aid and a local Portobello graphic designer is helping us put together the digital version of the book so that we can self-publish. On the eve of World Down’s Syndrome Day 2022 and with so much that has happened over the last two years, we celebrate achievement for people who are different and recognise the huge amount of support that families like ours have received from the doctors and nurses who kept our daughter alive to the butcher who never forgot to say hi to her.