“I Am Here to Be Seen”: Erin’s Journey to New York

This Scottish Learning Disability Week, we’re celebrating Erin in Edinburgh who, with the support of Community Integrated Care, achieved a dream years in the making: meeting friends in America she’s known for almost twenty years through the World Williams Syndrome Association.

Erin, who has been supported by Community Integrated Care since 2012, travelled to Buffalo, New York to attend the World Williams Syndrome Association’s (WWSA) international convention in July. She has Williams syndrome, a rare condition shared by around 18,000 people in the UK and has stayed connected to others with the condition through the WWSA.

A trip years in the making

Erin had wanted to attend the convention for years, but costs had always made it out of reach. With support from Community Integrated Care, she began saving and reached her goal sooner than expected.

Preparation took six months, with daily reassurance and planning. Accessible itineraries were shared with Erin, her support team and her family, and lots of time was taken to work through what to expect before the trip was finalised. It was Erin’s first time travelling such a distance, and her first time abroad without family.

Once in Buffalo, Erin and support workers Niamh and Angie spent five days at workshops and convention activities, with evenings taken up by a trip to Niagara Falls and long-awaited reunions with friends Erin had known online for nearly 20 years.

A learning experience for all

Niamh and Angie also attended a carers and family convention alongside the main event – an experience that reshaped how they think about supporting Erin.

Angie said, “It was very clear to me that there is such a broad range in how Williams syndrome manifests for individuals. It reminded me that regardless of a person’s diagnosis,  as support workers we should be understanding of the uniqueness of each individual, and not use the syndrome as a blanket diagnosis and assume what people can and can’t do.”

Niamh said, “My favourite part was seeing Erin enjoying her independence. She really pushed herself out of her comfort zone, and I could see how good it was for her to prove to herself, and everyone else, that she can do it.”

On the final day, Erin stood up in front of the WWSA group to share what the trip had meant to her.

“I didn’t think I could do something like this. I was a bit scared, but once I met everyone, they were all incredible and inspiring to me.”

Since returning home, Erin has shared her experience widely, and given talks to her family, senior management at Community Integrated Care, and her support team, helping spread understanding of Williams syndrome across the organisation.

Looking ahead

For Erin, the trip was about more than just going to America. Meeting others with Williams syndrome face-to-face, gave her a new perspective on her own life, and boosted her confidence and passion for creating awareness of the learning disability.

“I don’t want anyone to give up on their dreams or who they are.”

Erin already has her sights set on the future: she hopes to attend another Williams Syndrome Association convention and wants to keep giving talks to her support team to build their understanding.

Marking Scottish Learning Disability Week

This year’s Scottish Learning Disability Week theme is ‘I am here to be seen’, and Erin’s story embodies it. She travelled all the way to America to learn more about herself, support the Williams Syndrome Association and represent her community – standing alongside others with Williams syndrome and making sure their experiences were seen and heard.

Erin’s story is a reminder of what’s possible when people are supported to pursue what matters to them, and how much we can all learn in return.