As a Disabled person supporting other Disabled people your needs, intensities, and behaviours don’t always align. When your children need you at your best sometimes you are in full fatigue, pain or overwhelm. Sometimes when your children need you at 100% you only have the spoons for 20%.

The admin for fighting for your child’s rights alone is a full-time job, usually thrust upon the main caregivers who are involved in other unpaid labour. You must organise and keep stacks of letters, social work information, phone numbers, track eating and bathroom visits, take bloods, give medicines, work out how to maintain wheelchairs and mobility aids, change your home to fit your child’s needs, and remember all those appointments.

All day, every day. It’s tiring, that doesn’t mean you don’t love and appreciate your child, if anything it means the opposite. To continue to fight for their rights is a noble thing, but families shouldn’t have to do it. Parents and carers shouldn’t have to fight this hard for everything, you shouldn’t have to give up work, or educate from home if you don’t want to. You shouldn’t have to struggle for every ‘accomodation’ it shouldn’t be this hard. You and your child(ren) should be given the same opportunities that others are.

If, like me, you also support Disabled children at work, this sustained effort intensifies. We are helping them with regulation and the massive task of growing up into their favourite selves too. And it’s… a lot.

When every aspect of your life is fighting for equality and equity for Disabled people, including you, your family and those you work with, it’s exhausting. It would be nice to take a day off from the onslaught of aggression and violence towards Disabled people.

Just one.

Please.