I Don’t Need Self-Care

 In The DS Advocate

I remember at roughly this point last year, when I was clinging onto my teaching job with my fingernails while trying, and failing, to meet all of Betsy’s needs being given a piece of ‘advice’ on how I could ‘cope better’. That advice was to practice ‘self-care’. I had no words at the time to explain how utterly dismissive, insidious and even a touch gaslighty that comment was. Suggesting that an exhausted carer is in that position because they haven’t taken good enough care of themselves is pretty damaging. Not to mention, dangerous. I have some words now though.

It’s time that carers weren’t dismissed, forgotten about and excluded because it makes you feel uncomfortable about your own life. It’s time that we were listened to, supported and given practical solutions to help us raise our children in the way they deserve. Society has a responsibility to put its arms around its most vulnerable families.

I don’t need self-care, I need you to care. I need society to care. I need the government to care. I need you all to care.

I don’t need self-care, I need funding for children with SEND to be restored to councils so my daughter can access the support she needs to actually attend school. I need her right to an education restored, as without a legal obligation to provide the intervention requested on her EHCP she is being denied an education because of her disability. I need her human right to an education restored.

I don’t need self-care, I need the NHS funding restored so my daughter can access the physiotherapy services and equipment that she needs. I need her to have access to the support boots that more privileged families can afford to buy. I need to not have to spend 2 years battling with letters, emails and complaints to even get an appointment. I need her to have her human right to medical care.

I don’t need self-care, I need the DWP to recognise that Down’s Syndrome is a physical condition that causes mobility issues. I need them to acknowledge that my daughter needs help to get around. I need them to help her be able to afford support for her hypermobile joints and a vehicle to transport her in. I need her to be enabled to move about and travel safely.

I don’t need self-care, I need a disabled badge for her to enable her to access places easily. I need our council to recognise the physical effect of Down’s Syndrome on my daughter. I need them to show some empathy in me asking for an extra 2 foot in a disabled bay to get her into her pushchair safely. I needed to spend the time I allotted to writing and appealing the refusal of a blue badge on working towards mobility goals with my daughter.

I don’t need self-care, I need the DLA department to recognise that sleeping on the floor of your child’s room in order to monitor her breathing and administer inhalers is doing care at night time. I need them to treat me like a human being and not a robot.

I don’t need self-care, I need the government to build more social housing so we have a chance of escaping our current housing situation. I need you to care about my daughter having a secure home for her future that we can afford. I need them to care about families trapped in expensive private rentals that they could afford before they had to give up work to become a carer. The problem is that our rent isn’t ‘expensive’ to those in government. It’s a drop in the ocean to them.

I don’t need self-care, I need to be earning the national UK minimum wage. My job is 24 hours a day, 7 days a week, for which I get paid £67.25. That equates to 40 pence an hour. I used to work full time. After spending 2 years in and out of hospital with my daughter, while at the same time trying to fight battles on all fronts to get her the services she needs and it was impossible. I left my career to manage my daughter’s care. £67.25 a week keeps us trapped in poverty. I need the government to care about us being able to afford to eat. I need them to care about my daughter’s standard of life.

More than anything I need you all you care. I need the voices of people who aren’t as exhausted as we are to raise up and argue our worth to those who have the power to change things. And then maybe, I might not have to spend every night wrestling with prejudice.

If everyone cared about our children with disabilities and if everyone held the government to account over their treatment of children with disabilities then perhaps we might even have time for a little self-care.

#CarersWeek2020

 

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