Brighton man's mission to get Niamh's Law passed

Drew Taylor, from Brighton, lost his fiancée Niamh Jarvis-Smith suddenly in June 2020 to acute pancreatitis shortly before they were due to be married.

Niamh was in her final year of her child nursing degree and was also working as a carer for disabled children.

On many occasions during days out, the 23-year-old experienced instances where staff members in shops, restaurants and other establishments discriminated against the children she was looking after.

Mr Taylor, who also witnessed several of these incidents, said discrimination included staff pointing and laughing at children, making “hurtful” comments and having a lack of understanding of hidden disabilities.

One example was when Niamh took a young person with learning disabilities to a fast-food restaurant.

While they were waiting in line to order, an alarm went off for ten to 15 seconds – this led to the child becoming extremely distressed, causing her to scream, cry, and bite both herself and Niamh.

According to Mr Taylor, an employee came over laughing and said they were being “dramatic, causing a scene and to wait normally like everyone else.”

On another occasion, at an amusement park, Niamh told an employee that she had untied the emergency cord that was taped to the wall extremely high up – rendering it useless if someone did have a fall.

Mr Taylor said the employee responded: “It’s no big deal, no one uses it”.

The 28-year-old now wants to see a change in the law to improve the experiences of disabled people.

Drew Taylor wants to see mandatory disability training rolled out to all staff in public facing rolls (Image: Drew Taylor)

Niamh’s Law would see the rollout of mandatory disability awareness training for all public-facing staff in the UK, which would be co-designed and co-delivered by disabled people and experts in the field.

“Niamh championed disability rights and was a passionate advocate especially when she encountered staff discriminating against the children’s needs and rights on days out,” said Mr Taylor.

“Niamh used her voice to educate and challenge misconceptions, but these should not have existed in the first place.

“It’s going to benefit other people but it’s also helped me find a way to honour her.”

Mr Taylor, who works for Grassroots Suicide Prevention, has launched a petition that has so far garnered just over 52,000 signatures and which he hopes will be considered by Parliament.

He said the reaction so far has been “really positive” and the campaign was even shared by comedians Adam Hills, Alex Horne and Desiree Burch.

“People realise how much it’s needed,” he said.

“It seems really weird it’s not already a thing.”

Mandatory training for health and social care staff about learning disabilities and autism was recently signed into law following a successful trial.

The training came into force after a campaign from the family of autistic teenager Oliver McGowan, who died at the age of 18 after being given anti-psychotic medication against both his and his parents’ wishes because he had experienced previous adverse reactions to this type of medication.

Oliver also had epilepsy and a learning disability.

An independent Learning Disability Mortality Review into the teenager’s death concluded that it was preventable.

Mr Taylor said as well as helping disabled people, the law will keep Niamh’s memory alive.

“Niamh was and will continue to be my biggest inspiration – I felt incredibly proud by everything she achieved in her life,” he said.

“If I can advance Niamh’s Law, it means more people will know of Niamh. Her memory will be kept alive, and she will continue creating a positive impact on people's lives.”