Unheeded

The medical model of disability says people are disabled by their impairments or differences. Under the medical model, these impairments or differences should be ‘fixed’ or changed by medical and other treatments, even when the impairment or difference does not cause pain or illness. http://www.disabilitynotthinghamshire.org.uk

I want to be very clear about something. I am only writing about my own experience with disability. I cannot speak for anyone else. I know I have had conversations around this with friends who would speak a similar truth and then I have had conversations with others who most definitely would seek a cure. I don’t want this to be divisive or topical. This is purely my own thoughts and feelings. You can’t argue with them. You can’t tell me I should feel or think a different way. That ain’t going to work.

Back to that rhetorical question I have been pondering – who decides on what is a meaningful life? Again it’s a rhetorical question. I do not want your opinion or a debate around this. There will never be an agreement on this. There’s defiant people like myself who will never give in or give up. Talk about resiliency! We keep asking to learn how to fish rather than dished up a serving of fish.

I don’t know how to skirt around certain things and remain diplomatic. In a conversation with a friend this morning she said she doesn’t care how many bridges she burns. I totally relate. My reply was let’s not burn the bridge down, let’s throw a grenade and blow it up. I haven’t done that yet as there will be no returning from that. It is tempting.

This is about capacity and competency and the assumptions abled bodied people make about us. As an autistic person, I know my failings. Believe me, I know. I live with them every single mother fucking day. I see my mountain of folding. I see the dust. I see the pile of books. Some read, some unread, some started and never to be picked up again. I have very important business cards and notes from meetings lying around in various piles demanding attention. I simply don’t know where to start. Executive disfunction is having a herd of elephants in your house and thinking about how to eat them all in one go. I can’t even think about starting with one bite. Lao Tzu may as well bang his head against a brick wall to get me to start a thousand mile journey. I am too busy thinking about what to pack, when to start packing, how many pairs of shoes I will need. And importantly I would need to unpack from my last trip. Wherever that was. Then do I need a passport? Forget that because I haven’t even filled out the form for the passport as that involves a level of planning also.

Despite these lets call them deficits, (They’re not by the way, just challenges that require support) I have such a capacity for so much. I can create and start a business with $20. I can teach others how to do this. Social media content? I love creating fun content. I might procrastinate over this also, but once I am on a roll I schedule a heap of content for my son’s Facebook page. I love nothing more than to connect with other creatives (read neurodivergents) and plan projects and talk about our wild ideas and dreams. Believe it or not, some of those ideas do come to fruition.

When it comes to running a business, I recognise my pitfalls. It’s hard to get support when you have zero budget. How do you apply for a grant when you have practically have a phobia around filling out forms. I would never expect anyone to work for nothing. What would be helpful for myself, and others I know, would be to connect with people in Government who can support us. Who can help our startup stay up. We’re not asking for any handouts just skills. Teach us. Show us don’t tell us. My friends and I have talked about this quite a bit. We have a vast amount of knowledge and experience to share. The problem is; we are wildly undervalued. We know this, we have always known this and we continue to have this reinforced. So very disappointing. So very disheartening.

Change must come. Change must start. It can’t be small, it has to be an avalanche. We are tired of being unheard. When we actually do command attention, we are unheeded. We feel redundant. It’s a spectacularly low place to sit.

We watch other able bodied people with similar ideas to us receive the very support we were seeking. It breaks our hearts. It tears us apart and we feel resentment. We feel betrayed. Please stop doing this to us.

I want to be very clear about something. I am only writing about my own experience with disability. I cannot speak for anyone else. I know I have had conversations around this with friends who would speak a similar truth and then I have had conversations with others who most definitely would seek a cure. I don’t want this to be divisive or topical. This is purely my own thoughts and feelings. You can’t argue with them. You can’t tell me I should feel or think a different way. That ain’t going to work.

Back to that rhetorical question I have been pondering – who decides on what is a meaningful life? Again it’s a rhetorical question. I do not want your opinion or a debate around this. There will never be an agreement on this. There’s defiant people like myself who will never give in or give up. Talk about resiliency! We keep asking to learn how to fish rather than dished up a serving of fish.

I don’t know how to skirt around certain things and remain diplomatic. In a conversation with a friend this morning she said she doesn’t care how many bridges she burns. I totally relate. My reply was let’s not burn the bridge down, let’s throw a grenade and blow it up. I haven’t done that yet as there will be no returning from that. It is tempting.

This is about capacity and competency and the assumptions abled bodied people make about us. As an autistic person, I know my failings. Believe me, I know. I live with them every single mother fucking day. I see my mountain of folding. I see the dust. I see the pile of books. Some read, some unread, some started and never to be picked up again. I have very important business cards and notes from meetings lying around in various piles demanding attention. I simply don’t know where to start. Executive disfunction is having a herd of elephants in your house and thinking about how to eat them all in one go. I can’t even think about starting with one bite. Lao Tzu may as well bang his head against a brick wall to get me to start a thousand mile journey. I am too busy thinking about what to pack, when to start packing, how many pairs of shoes I will need. And importantly I would need to unpack from my last trip. Wherever that was. Then do I need a passport? Forget that because I haven’t even filled out the form for the passport as that involves a level of planning also.

Despite these lets call them deficits, (They’re not by the way, just challenges that require support) I have such a capacity for so much. I can create and start a business with $20. I can teach others how to do this. Social media content? I love creating fun content. I might procrastinate over this also, but once I am on a roll I schedule a heap of content for my son’s Facebook page. I love nothing more than to connect with other creatives (read neurodivergents) and plan projects and talk about our wild ideas and dreams. Believe it or not, some of those ideas do come to fruition. 

When it comes to running a business, I recognise my pitfalls. It’s hard to get support when you have zero budget. How do you apply for a grant when you have practically have a phobia around filling out forms. I would never expect anyone to work for nothing. What would be helpful for myself, and others I know, would be to connect with people in Government who can support us. Who can help our startup stay up. We’re not asking for any handouts just skills. Teach us. Show us don’t tell us. My friends and I have talked about this quite a bit. We have a vast amount of knowledge and experience to share. The problem is; we are wildly undervalued. We know this, we have always known this and we continue to have this reinforced. So very disappointing. So very disheartening. 

Change must come. Change must start. It can’t be small, it has to be an avalanche. We are tired of being unheard. When we actually do command attention, we are unheeded. We feel redundant. It’s a spectacularly low place to sit.

We watch other able bodied people with similar ideas to us receive the very support we were seeking. It breaks our hearts. It tears us apart and we feel resentment. We feel betrayed. Please stop doing this to us.

One thought on “Unheeded

  1. Dear Laura,
    Beautifully expressed and it’s hard not to be affected by your predicament. It hurts my heart to hear of the suffering that you, and others suffering the same or similar situations, have to live through. Your resilience continues to amaze me and I am so very proud of you and the effort you have made just to be heard. Love you, Mumma B xxxx

    Liked by 1 person

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