2023 Update

This is a personal blog started in 2011. It is no longer active, updated, or maintained. Unfortunately, it appears that I've also irreparably broken some of the links by accident.

27 May 2012

You are not a burden.

To the person who found my blog by searching Google for "feel like i'm a burden aspergers:"

You are not a burden.

You are a human being, and your life can be rich, full, complete, fulfilling, and meaningful on that basis alone.

You have the same natural right to life and equality and access and opportunity as anyone else does, and anyone who claims that you are a burden is insecure and ableist.

You are beautiful beyond vision, talented beyond measure, intelligent beyond comprehension, and bursting with the amazing capacity to live well and meaningfully and to share your unique perspective and way of existing in the world with everyone you encounter.

You are not broken or defective or lesser. Don't believe anyone who tells you so, whether explicitly or implicitly, because anyone who says that you are less than because your neurology is divergent from a constructed norm is lying to you.

Your neurology is divergent from the accepted "norm" of human neurologies, but that's not a bad thing. You are okay the way you are. Your brain is beautiful.

You may learn differently than your peers, need certain supports, accommodations, or services in order to have full and equal access, think differently than your colleagues, communicate differently than your family members, or experience sensations differently than the other people around you.

But those differences are not bad. They are part of what makes your experience of life unique and beautiful.

You have the capacity for deep, unbounded empathy. You may be moved to action by egregious injustices, and you may be the first to speak up in the face of wrong. You may form brief connections with others that will impact them for a lifetime without you ever knowing, or you may find comfort and trust in only one or two friends over your own lifetime. You may take intense pleasure in solitude, and you may have the potential for wild creative exploits.

You will have struggles that non-Autistics won't face. And you will share some of your struggles with your non-Autistic peers. You may find community among other Autistic people, knowing that there are people with whom you can share space and communicate shared struggles and joys without ever speaking a word.

Your only debt to society is to change the world for the better, even if all that means is a perfunctory encounter with a stranger that leaves another's life a little bit better, another's worries a little bit less daunting and frightening.

You don't owe society anything else.

And you are not a burden to society if you need any form of accommodation to navigate this world. The society in which we live was not constructed around the needs and experiences of people like you and me. In fact, it ought to be the basic, minimum standard of human decency to ensure that you and I have equal access as everyone else. And sometimes that means making accommodations for us.

If a person in a wheelchair wants to enter a building, there should be a ramp long before he ever gets there. And if a Blind person wants to read a book, there should be an audio version long before she ever searches for it. Because that's making the world accessible for everyone instead of keeping the world accessible only for a few.

If I need written, visual instructions with clear deadlines to do my job, there should be no argument about it. That's not me creating a burden. That's me demanding my equal right to full participation. There's no one correct way to do things or experience life. To exist differently in the world does not make you a burden on society.

Society's burden is to compensate, however slowly, for its long train of abuses, disenfranchisement, marginalization, discrimination, dehumanization, and paternalism perpetrated and perpetuated against those who have been denied power, equal rights, and self-determination. That is the burden that society bears.

42 comments:

  1. Beautiful. Thank you for writing this.

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  2. very gifted writing and a great humble spirit of empowerment!!!
    check out my writing at www.scottrdavis.blogspot.com

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  3. All I can say is WOW

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  4. *sniffles* I could only skim this. When I can compose myself, I might have something similar to say. But I just want the person you are addressing to know something. Once upon a time, people taught me to think of myself as a burden and that I owed everyone who inhabited this planet everything. Do not allow yourself to believe that, PLEASE do not! Because once you start to internalise this about yourself, it is like cancer. You never truly get rid of it. *sniffling* *sobbing*

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  5. i hate to say it..

    but no matter how it is looked at it..and you did write that very nicely..

    as an aspie..

    i am a burden..and there isnt anything i can do about it

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    1. I am going to write more about this on my own journal in good time. But for the time being, I want you to look at this post on 8bm and understand something. It touches on a central aspect of the problem all of us on the autistic spectrum currently face. We are being taught to accept a view of ourselves that does not serve us. You are a classic example of that. When you learn to refuse this view of yourself that does not serve you, your world will change dramatically.

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    2. I'm sorry you feel that way, and I hope that one day you will be able to overcome these feelings that you have internalized.

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    3. You're a burden for being what you are? Not only is it impossible to say something of a burden because they are part of a group, but I seriously doubt why you would wallow in self-hatred.

      If anything that is the only burden here, on your and our spirits.

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  6. What a beautiful piece of work. Thank you for your article and shedding light where it needs to be shed. My prayer is that this magnificent work "reaches the dark corners of this selfish world and opens the eyes of the blind"
    thanks again,
    Todd Psick

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  7. I am glad you posted this!! I think in order to succeed in life, any one needs to find the strength inside themselves to forget what others say to put them down. There will always be people regardless of what background they come from who will try to bully someone who is different than they are and bring their spirits down. I have dealt with this my whole life and probably will always have to deal with it. The most important part is to ignore those people and just do what counts for me (or you)!! Every one needs to remember that always :) If I know I can do something, I do it regardless of what others said to me in the past!!

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  8. cant say anything to to top that but wow

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  9. Lydia,

    I hate promoting my own work on what are supposed to be other people's journals. But when you read what I have written in this entry, I believe you will understand why I choose to do so in this comment.

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    1. Oh, and that happens to be my 110th post. Go me. Haha. ;)

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  10. So well said. The ignorance of society never fails to astound me, yet before my daughter was diagnosed with autism, I hadn't noticed just how bad it was.

    CJ x

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  11. i felt really very good after readin this article. my son is diagnosed with autism.

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  12. thank you not just for this piece, but all your work. my son has autism and we are just learning about that and how it affects "our" world. he's not alone, I'm here for him 100%. your blogspot and your writings and the people who post are such a help for me...thank you all!

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  13. I come back and read this whenever I'm having a crap day. When chocolate doesn't work, this generally does. Thought I should thank you for it. Thank you.

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    1. Thank you for your kind words. I'm honored and humbled every day that I read comments like yours.

      Lydia

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    2. Yes! Your poem is what I read too when I'm having a crap day. Like today. Thank you for putting me into words.

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  14. I somehow never read this the first time around. This is beautiful and perfect and I needed to read this today.

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  15. I don't thing that autistic people are a burden more that other ppl for other ppl, but I have to say, I am. (And saying this makes me a burden even more, because I know ppl don't want to hear this. But I need to express myself. If I don't talk/write, things don't improve for me and I want to feel better once aswell. Even if I don't think that I have this right, because I'm a burden. And if I tell others, that I am, I make them feel bad, so I shouldn't tell, but I don't know any other solutions.) So why am I a burden? Not because I'm autistic, but because I started talking and with this I am involving other ppl in bad stuff. Which is shouldn't do. Like I talk about pain, and I make my friend worried. This should not happen. (And then sometimes, but nowadays its a bit better, if I realize that I did something bad to someone else, what I don't want to do, like by talking about pain I make someone worried, I freak out, because I didn't wanted to make someone worried, I just don't know how to solve these problems by myself and what to do. Of course this only leads to more trubble....) :(

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  16. Another example would be, that in some cases I'm to honest. E.G. I'm asked "Do you enjoy this?" and if I don't I say "No". And a few minutes or hours later I realize, that this was the false answer, because I should enjoy.

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  17. Oh and of course my parents, because I always forget them (like now) and I have made big trouble to them with staying in hospitals/psychiatry etc.

    Is it possible that I edit my comments?

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  18. This was the perfect thing to read after watching the Congressional autism hearing! That was a hard thing to watch, hearing myself called a burden again and again. Thank you for this post and for helping to lift my spirits again after seeing the way members of my government talk about me and people like me!

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  19. Thank YOU for this incredibly sensitive, insightful and powerful commentary. I forwarded your link to a good friend who is struggling with this issue right now. And thank YOU for ALL you do.

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  20. Thank YOU for this incredibly sensitive, passionate, insightful and powerful commentary! I sent your link to a friend who really needed to hear this right now. And thank YOU for ALL you do!

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  21. I just read your blog about being a burden. How timely. I was moved to tears reading this. I am an adult who was recently evaluated for ASP. It turned out that although I had many characteristics of it, I did not officially make the diagnosis. With that being said, the neuropsych did say that I resemble many women with ASP. I just got off the phone with a neuro-typical friend. Our falling out had a lot to do with my actions and my perceptions due the disability. I felt like @#$$#$%. But reading this blog, helped me feel better. Thank you! Thank you!

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  22. I really needed the boost in confidence, going into high school a week from Thursday. Then I found this. Really what I needed, having felt like sh!t the last month, and now suspecting major depression. Thanks for the article.

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  23. Wow I am autistic and just wow I cried almost through the whole thing sometimes I feel as a burden to my brother or my mother and growing up with no father just wow beautiful thank u so much

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  24. As someone on the AS spectrum, I disagree. Call it what you want: learning differently, being neurodiverse, etc... If you are low functioning, you are a burden, plain and simple. When I was a kid, I had meltdowns, threw tantrums, special ed, etc. A labor of love, yes. But they were forced to spend money and resources they otherwise wouldn't have needed had I never had AS. My family says they were glad to have me and considered it worthwhile. I see it differently.

    I was born in 1981. If my parents could've somehow known I'd be AS and they considered aborting me as a result, I wouldn't be mad. I'd hardly blame them.

    I see autism/aspergers as a disease that needs a cure. For the AT/AU currently living, it should be up to them whether to take it. However for AT/AU yet to be born, it should either be aborted or cured before being born.

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    1. Clarification: even for the unborn AT/AU's, the parents should still be able to have them born as is. If I were a parent, I'd opt for curing the fetus or aborting it. It does not need the extra life challenges that I faced.

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    2. Both of you are very ignorant. Autism is not a disease and it doesn't need a cure; it just needs to be worked around. Also, if you hate having autism, then you must probably hate yourselves.

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  25. May I print, frame, and hang for my son to read every day for the entirety of his beautiful life?

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  26. Hi Lydia,

    I came across this piece on The Mighty's site, and I could not have read it at a better time. My cousin has an Asperger's diagnosis, and is currently struggling with this (a lot). To respect my cousin's privacy, I will not go into more detail on this public comment, but I would be interested in talking to you privately, if possible.

    I would also be honored if you would grant me permission to re-post this piece on my website, https://TheBehaviorStation.com. The Behavior Station is a resource I created. All rights would remain yours, and a link to this original post would be included with it.

    Please let me know how I can contact you, or feel free to email me at Tiffany@TheBehaviorStation.com.

    Best,

    Tiffany N Kilby

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    1. My contact info is in the sidebar to the right, but here it is for convenient reference: lydia@autistichoya.com. Thanks!

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  27. You may not see this, but It's hard to admit my fault, especially when it comes built into my mainframe, In spite of all this, I thank you for the read. I realise that I'm a coward. Best of luck.

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  28. I started crying reading your post. I'm in the early realization of my aspergers, and struggling to find a diagnosis by a professional in my area. I'm frustrated and scared, but this post gave me so much comfort. Thank you.

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  29. Many times I feel like a burden even with being Autistic, being dxd with asperger syndrome, even with the many interactions I have with people especially with echolalia. It is hard, it is really really hard not to feel like a burden because of the way society is in general, the way the media news portray autistic people and most importantly the way peers who are autistic live in group homes without being able to truly advocate for themselves. I feel beaten down by so many people and I am still here so I can keep on moving along with the things I am doing. And when Autistic people do speak up, Autistic people are told we are twisted or distorted. The stigma of this is also with friends I made who have various psychiatric disabilities, but not autistic. It is like there are so many things that cross between disabilities. People in the disability community especially developmental disability seem to be told to have our own mind when we always have our own mind. Though, the vulnerabilities of developmental disability is huge sometimes because we can be influenced just as nondisabled people are, we can be sensitive to everything, and we can be hurt like anyone else can be, and we also can be jerks too like anyone else can be, and we can learn to be a better person growing enormously as a person just like anyone else can be learning to take responsibility. Thank you for this post!

    I think this post is very helpful and I also think everyone's voice matters and every story counts regardless who is telling the story. We just always have to hear both sides of a story every time to see the full picture and come to our conclusions.

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