By Christine McClements
Since having my severely disabled daughter Lilia 12 years ago, I’ve been on a journey into the everyday exclusion faced by severely disabled children and adults in Northern Ireland. As far as some public service providers are concerned, it can feel like my daughter doesn’t even exist. Her toileting needs aren’t catered for in new community buildings and her play needs aren’t catered for in new playparks.
I would never have imagined that as mum to a disabled child, I would have to spend years trying to convince people that my daughter was worth more than a public toilet floor. Throughout my daughter’s childhood she has had to be changed on unhygienic toilet floors due to a lack of changing places toilets – larger toilets with a changing table and hoist. The choice was between this or keeping her at home. Many councils are also failing to provide fully inclusive play equipment in playparks, even though this equipment is now widely available. Disabled children quite often receive minimal or no play opportunities.
The fact that I have had to constantly fight for my daughter to be able to fully participate in society and for her to be treated as a person of equal value, worth and dignity, is a sad indictment of the state of disability rights in Northern Ireland in 2020. Provision of fully inclusive public buildings and services that benefit everyone appears to be the exception and not the rule.
‘my daughter is a full and equal citizen and I will not allow discriminatory attitudes to stand in her way of leading a happy and fulfilled life to the best of her ability’
I have often had to rely only on the goodwill or charitable approach of individuals within organisations, but this is not a rights-based approach, and it keeps my daughter a second-class citizen based on her disability. Safe and dignified toileting and participation in play should be upheld as basic human rights for every child.
The Minister of Finance Conor Murphy has recently agreed to amend our local Building Regulations to make changing places toilets mandatory. After my years of campaigning, this is incredibly welcome and great progress, however it saddens me greatly that some organisations have to be mandated to provide toilets for severely disabled people.
Our public bodies should be doing significantly more to ensure that disabled people benefit equally from public services and can be at the centre of their communities and not marginalised at the edge. Public money should not be used to perpetuate social exclusion, discrimination and disadvantage. This is counterproductive to the public interest of creating a more shared, equal and diverse society. Equality and inclusion should be at the heart of everything public bodies do – every project, every time, no excuses.
People have said to me that in years gone by you wouldn’t have seen a severely disabled child like Lilia out and about. I however, am very clear that my daughter is a full and equal citizen and I will not allow discriminatory attitudes to stand in her way of leading a happy and fulfilled life to the best of her ability. Anyone standing in her way really needs to now step aside, because Lilia is breaking down barriers and bursting through.