Disability porn...

I found this during Invisible Illness Week, but I have waited to share it because I have been pondering  deeply what Stella Young has said.  I think it is important ... profound, actually.  I hope that you will watch it.  I hope that I remember this.




At first, I took to the message because I have felt the "inspiration" pressure/burden in a few ways.  To be frank, I have experienced the burden with regard to sexual abuse, which I KNOW is NOT disability.  Although, I do think that you are treated as disabled, after a fashion, with a history of sexual abuse.

The burden is that I have heard countless times that I should look at _________ as an opportunity to teach others (pastors, doctors, colleagues, friends, etc.) about sexual abuse.  How to pray for someone like me.  How to help someone like me.  How to befriend one like me.  How to serve one like me.  Frankly, I want to SCREAM whenever I hear that.  Why should I be the one to do the teaching?  Why do these folk not already know these things?  MILLIONS have been sexually abused.  This is not a new or a rare thing in my life.  The Courage to Heal was first published 28 years ago.  Nearly three decades!  Why is the burden of educating others about this mine?

And then there is the whole issue of silence with sexual abuse.  It is okay if someone like Elizabeth Smart, whose story of sexual abuse is used as an inspiration to others.  It is not okay if you are sitting in a bible study sharing prayer requests and mention sexual abuse.  Publicly, on a distant and grand scale, sexual abuse survivors are inspirational.  Privately, up close and personal, sexual abuse survivors make other uncomfortable and the particulars of their experiences is oft inappropriate.  SIGH.

I will say that I do feel the inspiration burden being chronically ill.  I've tried to write about how the majority of messaging in Facebook dysautnomia and chronic illness support groups is that I am a warrior.  I am inspirational in my battle.  But I am not a warrior.  And I am not inspirational.  I struggle.  I doubt.  I despair.  Millions and millions and millions have struggled and doubted and despaired for myriad reasons; they are not warriors.

I cringe (and hurt) when folk tell me that I am strong or brave for merely living the life I have.  Such remarks, well-intended though they might be, wound.  They dismiss my struggle, my doubt, my despair.  They dismiss how I am feeling.  They insist that I am just "fine."  It needs to be okay for me to be ill, for my illness to be normal.

So, in a way, when I discovered the idea of disability porn, I was ready to listen to that message.  And it is a message that I find ... profound.  The word "porn" is so shocking to hear coupled with disability and applied to those memes and videos floating around social media.  But if you define porn as being  to objectify one group of people for the benefit of other people then that certainly applies.  And if you take that definition and start applying to most of the stuff about disability on social media, you begin to see why Stella Young worked to advocate against the social model of disability:  that folk with disabilities are more disabled by the society in which they live than by their bodies and diagnoses.

One bit from her TED Talk that really reverberates is what she said about her body ... that she's lived in it a long time and loves it.  Loving your body is so very foreign to me.  But it was the bit just after that:  she's learned to use it to the best of its capacity.  That made me think ... how can I use my body to the best of its capacity and then be okay with that ... limit?  I see that as a shift in thinking: identifying what bodies are capable of and accepting that rather than holding to the notion that you should spend your life striving to exceed your capabilities.  Maybe I am not putting what I am thinking about her comments in to words well enough to communicate it.  But I did want to note that bit of her talk.

Sadly, later in 2014 (the year she gave this TED Talk), Stella abruptly died.  It is my hope that her message more disabled by the society in which we live than our bodies and our diagnoses.  And it is my hope that posting it here gives pause to the few who read my blog.  Maybe enough pause to cause you to share the TED Talk with others and challenge yourself to think differently about the disability porn that comes across your social media feeds.