Wednesday 27 November 2019

American disability rights lawyer backs New Zealand student’s fight for change

A campaigner who successfully lobbied for law change in the United States, is in New Zealand to support a teenager’s fight to help people with a debilitating disease.

Disability rights lawyer Allyson (Ally) Bain is backing 15-year-old Nicole Thornton’s efforts to help 20,000 people affected by Crohn’s disease and ulcerative colitis, also known as Inflammatory Bowel Disease (IBD).

These excruciatingly painful conditions can prevent some people from leaving home, partly because they often need urgent access to toilets. Ally says that a lack of accessibility can cause severe stress for those with IBD.

She and Nicole have joined with Crohn’s and Colitis NZ (CCNZ) to campaign for change. They are calling on New Zealand businesses to allow access to staff toilets for people with a CCNZ “I Can’t Wait” card, when there are no public restrooms nearby.

This is in-line with recommendations from a Health Select Committee report on the issue, published in February 2019.

Ally said: “Nicole is a real hero, I fully support her efforts and advocacy, as well as that of CCNZ. I was diagnosed with Crohn’s disease at age 11 - I have lost weight from flare-ups, gained water weight from steroids, had an accident in a retail store, and wished for remission.

“Many people with IBD are too afraid to leave their house to go shopping or socialise for fear of not being able to find a restroom in time.

“Allowing people with IBD access to staff restrooms will make a huge difference to thousands of people. I urge New Zealand organisations and businesses to get on board by displaying an official CCNZ ‘I Can’t Wait’ window sticker so people know where to ask for access.”

Ally successfully advocated for an American law (The Restroom Access Act) enacted in 19 states - known as ‘Ally’s Law’ – compelling businesses to provide toilet access to people with diseases like Crohn’s disease and ulcerative colitis.

Nicole has previously organised a petition seeking access here, which led to a Health Select Committee Report. While this did not result in a law change, it pushed for organisations to be more accommodating of those in need of restrooms.

Chair of CCNZ, Dr Richard Stein, says: “Unfortunately, what happened to Ally in the United States happens in New Zealand all the time.

“What was different in her case was her courage, like NZ teenager Nicole Thornton, to speak publicly about her experience and advocate for change. In the process she has made a difference in the lives of thousands of people, those who were once afraid to leave home for fear of having an accident in public.

“While law change is not currently on the cards for New Zealand, we’d love for businesses to get on board and support people with Crohn’s and Colitis, giving them the freedom to live more normal lives.”

More than 20,000 New Zealanders are affected by Crohn’s disease and ulcerative colitis. New Zealand has one of the highest incidences of these diseases in the world.

Ally and Nicole will be discussing patient advocacy issues to more than 400 medical professionals at the New Zealand Society of Gastroenterology annual conference in Wellington today.

CCNZ is calling for businesses to show their support by displaying window stickers (supplied by CCNZ) to demonstrate they will allow use of their facilities by people who need urgent access (and hold an authorised CCNZ ‘I Can’t Wait’ card).

AbbVie New Zealand, a pharmaceutical company, and Medtronic, a medical technology company, have contributed to Crohn’s and Colitis NZ to support Ally Bain’s visit to speak to the NZ Society of Gastroenterologists to raise awareness of her message.

AbbVie’s General Manager – New Zealand, Andrew Tompkin, says: “Stigma and lack of knowledge still exists around Crohn’s and Colitis.

“CCNZ’s work is vital to raising awareness and building support for those living with IBD in New Zealand, and we are proud to be able to support this mission.”

For more information on Crohn’s and Colitis, and to request a CCNZ window sticker for businesses, visit: https://crohnsandcolitis.org.nz/

Additional notes:

The report of the Health Select Committee into the Petition of Nicole Thornton (including recommendations) can be found here: https://www.parliament.nz/en/pb/sc/reports/document/SCR_84975/petition-of-nicole-thornton

About Ally Bain and Nicole Thornton:

Ally Bain JD is a lawyer for the American Civil Liberties Union (ACLU) in the United States. She will be addressing the NZ Society of Gastroenterology Society at their Annual Scientific Meeting on 27 November 2019. Ally will be speaking about patient advocacy and her struggle to successfully enact a law in the States, known throughout the world as “Ally’s Law”.

Ally’s Law, The Restroom Access Act, grants people with medical conditions access to employee restrooms when no public restrooms are available. Ally, who has Crohn’s disease, will be joined by young New Zealander, Nicole Thornton. Nicole, who also has Crohn’s disease, petitioned Parliament at 13-years-old for a similar law and last year courageously addressed the Health Select Committee.

When Ally was 15-years-old, she experienced a painful episode in a Chicago store, urgently needing a toilet. She was refused access to the store’s employee toilet, despite pleading with the manager. Ally had an accident in the store. Together with her representative in the Illinois State Legislature, Kathleen Ryg, Ally was successful in getting the first “Ally’s Law” passed in the state of Illinois. Sixteen other states have since followed suit, all passing their own “Ally’s Laws”.

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