Disability awareness

This is something I've been wanting to write for about a week. But I've been so upset and had no idea where to start. 

I said on Instagram a few days ago that it is really important for me to document these things meaning everything that happens to me as a result of a disability. Especially the ones people don't see or value as being important. 

Since the start of corona I've seen so many ableist posts for so many people from different walks of life, I spend 90% of my time at home most of which is spent asleep or resting. People have been saying that you have no purpose at home or that you can't achieve anything from the comfort of your own home. 

As a person with disabilities and one who can't get out hardly at all it has really got to me. I work so hard at many things including staying happy and as well as possible.

 Something that probably seems obvious but the more I think about it maybe it's not. I have to put so much more effort into doing anything than an average person does. 

I always tell myself that at the end of the day, I've put more effort in so it means more than what others do. I pride myself on that mindset a lot when I get down in the dumps. 

The media has much to play in people's perceptions of the disabled community (some of my best friends) many people think we are worth less than others. Simply because our reality is, without stopping to think about what lifeit is like for us. 

I've spent the past 7 or 8 years trying to survive in my reality of self-isolation. I've spent about 4 or 5 of those years rebuilding my life. Teaching myself how to read and write again. Something you never expect to have to do. I succeeded but as a result became more aware of what it is like to live with severe disabilities where that is your whole life, forever and always. If at all ever possible I would love for the opportunity to give that back to others who need it. To re-teach them or at least allow them access to literature in one way or another. 

These comments made me question if everything I'm proud of is just completely pointless because it's not what others are achieving. I'm not even on the scale of small accomplishments if you put it that way.

 I don't know who will read this but whoever you are I bet you know me well enough to know my lack of education is my biggest insecurity. It sounds bizarre yet it's something that always gets me down. Especially on exam results day or anything of the sort. I'm extremely sensitive about it. 

I also massively struggle with self-confidence, another thing I'm pretty sure is partly related to schools and also in part how again no one seems to see how hard I work at everything I try to do. 

Thinking about all the stuff I failed or haven't achieved and all the stuff I want to do but can't. 

I've told a handful of disabled friends about this who have told me I have every right to be upset and that this is extremely ableist. One disabled activist even replied to my comment on her post (the post was about similar things) saying that it was ableism at its highest. 

I have massive respect for these people, as it is something I'm trying to do myself, considering what I have seen lately it makes me think in failing in this. My main reason for writing this blog about my own experiences as well as others is to include other disabilities that I have no or little knowledge of. That way I learn as well as whoever reads it. 

What she said gave me so much reassurance that I wasn't being overdramatic. 

Whenever I see people who I went to school with posting about achievements online I always think to myself things like I knew you were going to be successful because everyone liked you ect… but I wasn't purely for the fact I was a sick child. That's not exactly true, well it is partly these people have mostly had a better chance than me to be able to achieve things. 

I've slept instead. 

I've been trying to work out what I have done that has really been able to make a difference. I've done a lot of charity work for disabled young people which is what I feel my life is all about. I feel my purpose is to somehow help sick people. I've done all my Swan Princess edits, blogs and lyric videos which despite what anyone else thinks means so much to them. 

As well as me because It's given something to do and lifelong friends who are some the nicest people I have ever known. I've also done various edits for other film companies and things. Something that of able to at some point would love to take further. 

I'm so proud that I can now both read and write again, also blog even if I am just venting and no one is listening. 

I know I shouldn't care what other people think of me or their perceptions of my life or the way I live it. But the thing is I'd say at least 95% of my friends have some form of disability, so I feel hurt for them as well as me. 

Things like this are seen so much in the media, who play so much with people's perceptions of disability and chronic conditions. For some reason, people believe them. There are so many disability activists who do incredible things, I've spoken to so many young disabled actors who have so much to say on the matter. It's truly inspiring. 

Ones who are already doing incredible things for the likes of us and ones who I know will continue to do so. 

No one should have the right to say me and my friends are worth less than anyone else. 

Education is seriously needed on the matter, language education. I know CBBC does an incredible job at showcasing disabled talent, but education needs to be spread across the board. Ask questions, ask how things should be worded and please please think before using ableist language. I'm absolutely exhausted. But I wanted to try and promote disability education. For me and everyone who right now is feeling the same for similar reasons. To all my disabled friends I'm so sorry but just know that I'm here for you and I love you. Also, I think you're brilliant 🌟 

Update from today: I did a mass tweet along with a few Instagram DMS of people of whom to write blogs about last night. An M.E charity has already responded so I'm in the middle of figuring out questions to send them Anne Haggerty also replied to my tweet with a yes so I've contacted her agent to make sure I've got the right address and to check the questions will go to the right place. 

My main especially now is to keep spreading disability awareness, inclusion and hope. I just really hope at least one person is listening ❤