This comment was left on a Tiktok I did earlier today talking about my carers. And honestly this is the reason it’s taken me so long to speak out.
You should go to my Tiktok to see the context.
But basically this person is warning me that by speaking openly about my experiences with carers I risk loosing my carers. I don’t think I would as I’ve intentionally not mentioned them publicly and won’t do so. But this is a really cruel thing to say to someone reliant on others.
This is one of my biggest fears that has kept quiet for a long time. The fear that speaking out would end up risking my care. And honestly this comment has me worried a little.
Often as disabled people are support can feel condition, our access to the world can feel conditional. Like we can have it as long as the ables want us to be able to have it. And speaking out against something, is a sure fire way of stopping the ables wanting us having access to the world. But you see, we deserve it anyway. Our access and inclusion to the world shouldn’t be conditional on whether we are nice. No one else’s is.
So while this comment has me a little worried it won’t stop me though. I finally have the confidence to speak out. Stopping now isn’t an option.
My Inaccessible Life 
Until someone spends 24 hours in our positions, they have no business telling someone with a disability to quit moaning. When you’re dependent on others for the most basic care that most people take for granted everyday, they have no idea of the struggles involved and just making sure care givers are there when you need them to be, as well as being professional with their work. My parents are still my primary caregivers, but I have care givers in the morning and evenings, or 24 hours a day when my parents go away for a weekend. Plus my sisters help sometimes with my care, so I’m blessed to have family that can still provide care when there’s last minute scheduling issues, or whatever might happen. It’s still a job though, so my parents and I tell them how do do certain things to make things easier on me. Doesn’t matter how they’re used to doing things with others, if they’re providing my care they need to take direction from my family and I or else it just doesn’t work. Everything I do is with my head and voice only, so the care I receive is quite intense, but it’s what I require daily. It’s just frustrating when people have rude opinions and they have no idea of the daily struggles we face in finding quality care.
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sorry for taking so long to reply, i’m just getting back into the block really and missed your comment. thank you so much for it. you’re absolutely right about the struggles of depending on care and how it’s not something that someone who hasn’t experienced it should be commenting on. i’ve had this conversation with of the disabled people that I know who don’t have the level of care that I do and still think they have a right comment on how I deal with it all. i’m glad you have that understanding of how your own care works with your family, it was definitely something that I struggled with, and for me getting as much of my personal care from people outside of the family really helped with this. it is certainly frustrating when people think they know better than us, when were the ones experiencing it. thank you again for your comment and apologies for taking so long to reply.
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