This article has been going through my head quite a lot recently and I’m feeling a little self indulgent so bear with me.
As a kid I was on the special needs list throughout school and given a classroom assistant to help with my tracheostomy care. I was considered disabled enough to warrant disability benefits right up until I turned 18 when they decided that I wasn’t mentally incapacitated enough and too independent. A panel of bureaucrats sat across the table and said “we can see you are but there’s nothing we can do.” I didn’t tick the right boxes.
I’ve worked since I was old enough and supported myself as much as I could and excluding a few short absences from work I have been successful in that.
Until now.
Now I can’t support myself. I struggle with self care. I’ve had to give up my home and I’ve lost my independence. I’m back to getting surgery’s every 6-8 weeks. They were usually just day cases but the last few have been fairly severe with extended stays (I get to have another one next week, isn’t that fun?) and doctors are making it very clear that any action they take will only stop further progression and I will never breathe normally or unassisted. Add to this multiple chronic illnesses, depression and anxiety, and a body that rejects medication and just decides to give up sometimes, I will never be 100% physically or mentally able.
And yet when I call myself “disabled” or make a flippant comment about it I’m told to stop. That I’m not disabled.
The legal definition is having a physical or mental condition that limits movements, senses, or activities. Well my trachey tube limits me daily. My illnesses limit me daily. It’s usually only small ways but they are limits and, over time, they build up and take a toll.
And yet I know that this current setback is only temporary. I know that in time I will get back to feeling my version of normal. Yes I’ll never be 100% physically able and I’ll never breathe on my own but I will heal and become functional again. So am I disabled?
What more do I need to go to through before others can accept how I feel?
*a version of this post was originally posted to the Faeriwood Facebook page but I am saving it here for those who need it.
As a kid I was on the special needs list throughout school and given a classroom assistant to help with my tracheostomy care. I was considered disabled enough to warrant disability benefits right up until I turned 18 when they decided that I wasn’t mentally incapacitated enough and too independent. A panel of bureaucrats sat across the table and said “we can see you are but there’s nothing we can do.” I didn’t tick the right boxes.
I’ve worked since I was old enough and supported myself as much as I could and excluding a few short absences from work I have been successful in that.
Until now.
Now I can’t support myself. I struggle with self care. I’ve had to give up my home and I’ve lost my independence. I’m back to getting surgery’s every 6-8 weeks. They were usually just day cases but the last few have been fairly severe with extended stays (I get to have another one next week, isn’t that fun?) and doctors are making it very clear that any action they take will only stop further progression and I will never breathe normally or unassisted. Add to this multiple chronic illnesses, depression and anxiety, and a body that rejects medication and just decides to give up sometimes, I will never be 100% physically or mentally able.
And yet when I call myself “disabled” or make a flippant comment about it I’m told to stop. That I’m not disabled.
The legal definition is having a physical or mental condition that limits movements, senses, or activities. Well my trachey tube limits me daily. My illnesses limit me daily. It’s usually only small ways but they are limits and, over time, they build up and take a toll.
And yet I know that this current setback is only temporary. I know that in time I will get back to feeling my version of normal. Yes I’ll never be 100% physically able and I’ll never breathe on my own but I will heal and become functional again. So am I disabled?
What more do I need to go to through before others can accept how I feel?
*a version of this post was originally posted to the Faeriwood Facebook page but I am saving it here for those who need it.
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