Aileen Neilson: The room where it happens

Aileen Neilson: The room where it happens

Aileen Neilson with her Olympic medal

Paralympian curling athlete & Accessibility Ambassador for Horizon Housing, Aileen Neilson, reflects on issues raised at the first ever Scottish Parliament for disabled persons last weekend and looks ahead to the UN International Day of Persons with Disabilities on Sunday, December 3rd.

It was a landmark moment for the disabled community last weekend as the Scottish Parliament hosted a special event in the debating chamber - its first ever summit to mark UN International Day of Persons with Disabilities.

Seeing disabled people fill the chamber was an emotional event for many, including veteran disability rights campaigners and the two disabled MSPs who addressed the event - Jeremy Balfour, convenor of the Cross-Party Group on Disability and deputy convenor Pam Duncan-Glancy.

Like many others, I participated online because the debating chamber was full to capacity. I was very mindful that I was fortunate to be able to do so from the comfort of my own fully accessible and comfortable home. For too many disabled people in Scotland, this is not their reality.

A powerful speech written by Convenor of Inclusion Scotland Jim Elder-Woodward, and delivered by Etienne d’Aboville, board member of Independent Living Fund Scotland, was a forceful reminder that while progress has been made, much remains to be done.

In a packed agenda, there was only a brief mention of housing - but Jim and Etienne’s well-chosen words struck home. They said many people across Scotland remain trapped in hospitals or inaccessible dilapidated houses, unable to access basic amenities such as a bathroom or kitchen.

As accessibility ambassador for Horizon Housing (part of Link Group) which has been providing accessible housing for decades, I have met many tenants with heartbreaking stories of hardships they endured while waiting for an accessible home.

It is 31 years since the UN created a designated International Day of Persons with Disabilities and this year’s theme is ‘Transformative Solutions for Inclusive Development’. We are in dire need of a transformative solution for accessible housing. It is a human right. It’s about inclusion, equality and enabling everyone to be independent within their community.

As past skip of Scotland and GB’s wheelchair curling team, I’ve been lucky to travel all over the world. Even travelling to Paralympic events planned years in advance, we often encountered accessibility barriers. Facing obstacles away from home is hard, facing them every day in your own home is even harder, especially if there is no solution in sight.

Fellow ex Paralympic athlete Baroness Tanni Grey-Thompson, also addressed the summit. She has campaigned for decades for equal access on public transport, particularly on trains. She was told 30 years ago that it would take until 2020 to achieve this. It has not happened yet. Tanni, a member of the House of Lords, is still fighting, and she has now been told it will take until 2070, by which time she would be 101.

Similar frustrations exist about slow progress on tackling a chronic and worsening shortage of accessible housing in Scotland.

The summit was reminded of the wisdom of the late former First Lady Eleanor Roosevelt who argued eloquently that an accessible home is both a fundamental need and right. She was well-acquainted with disability issues as her husband President Franklin Roosevelt was paralysed from the waist down after contracting polio.

Eleanor was the first chairperson of the UN Human Rights Commission in 1946 and was instrumental in drafting the Universal Declaration of Human Rights.

She wrote in 1958: “Where do human rights begin? In small places, close to home, so close and so small that they cannot be seen on any maps of the world. Yet they are the world of the individual person — the neighbourhood he lives in, the factory, farm, or office where he works.”

On Sunday, when the world marks the UN International Day of Persons with Disabilities, I hope the focus is firmly on the future and committing to do more.

The mantra of the disabled community is ‘nothing about us without us.’ It is important to keep this in mind when we can hopefully once more reconvene in the debating chamber, this time with accessible housing on the agenda.

Musicals fan Pam Duncan-Glancy quoted lyrics from a song in the hit show ‘Hamilton’ at the summit. She reminded everyone present that the disabled community needs to be ‘in the room where it happens.’ I could not agree more.

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