Tuesday, January 24, 2012

A Public Letter

To: Still in Hiding:

I do not know if what I'm about to do will be upsetting to you. I want to highlight your comment regarding the 'She Never Knew She Never Knew' video by making it part of a blog post. I usually don't do this without permission, however, I have no way to reach you. I finally decided that your comment was bravely made in a public space, therefore, it was intended to be read. I hope, I really hope, that doing this is OK with you.

To Blog Readers:

For those who did not read the comment, I am reproducing it here, completely without edits:

I was angry at you when I saw that video for the first time. I didn't like to be made to feel feelings that I've stuffed away. I did not live in an institution, I lived with something equally damaging. I lived with being my mother's tragedy and my father's disappointment. They didn't want a child on wheels. They never took me out, admitted to only a few of my existance. I was home schooled, the call it now, but the experiece was rather like getting education in a prison cell. If I left the house, it was after dark, and we'd drive long distances to be in placed where we'd meet no one we knew. I never knew about girlfriends, and gossiping, and dances, and playing with others. The difference between Arlene and myself? I knew I never knew. And it's left it's mark. I can't go out without a sense of shame. People's stares hurt me to the core, more than they should, because I know that my parents fled from them. Mr. Hingsberger, I happened upon your blog while looking for something else. I've stayed ever since. I've never commented. But I want you to know that you have introduced me to a world of pride and self respect as a person with a disability. I don't know why you write this blog, I can sometimes feel the cost behind the words. But I want you to know that for me, here in the rest of the life I have, you have made a difference. Thank you. On the 23rd, I will hold a small funeral for my childhood. Then, I hope, I can say goodbye to all that and begin to work on beginning. I shall play this song as my prayer for the childhood, for the life, I lost. Thank you Dana and Miles. Thank you for telling the story of many of us.

To: Still in Hiding:

 I thought of you all day yesterday. The image of someone having a funeral for their childhood registers in my mind and heart as a tremendous act of courage. Saying 'goodbye' and 'farewell' to one's past is one thing, but to say 'rest in peace' to memories is quite another. I have tried, many times, to bid adieu to hurtful moments, but they never listened. I had said 'Goodbye' but they had not listened. They trotted along behind me, weighing me down at some moments, catching me off guard at others. It wasn't until I did, as you have now done, allowed them to rest, to have their own peace that I began to feel free of them. I had to mourn their place in my life, I had to grieve the loss of the anger with which I had held them so tight, an anger that consumed me. The hurt was gone, but my limbs had grown weary from having carried them so far along the way. I hadn't thought of this process as a 'funeral' but I'm guessing that's exactly what it was. So, though you don't know me. I was there with you, several times yesterday, in spirit. I believe that many readers here, I have generous hearted readers, were with you too.

What I wanted to say to you, however, was that life is not to be lived in hiding. I know I am presumptuous to say this to you. And I may well be wrong. But, I feel this deep need to say what I have to say. Many, many writers in the disability community have written that the gay community and the disabled community are twin communities. That we are born into families much different than ourselves. Some of us are born in to families who accept our difference with love, others, deep in their hearts, would wish us different if they could. So, even nestled into our mother's arm's, even sitting on our father's laps, we are different. Part of the process of growing into pride, which is every bit as important as growing into adulthood (and adulthood may not be truly possible without it) is the 'coming out' process. Not 'coming out' to the world. No, that comes later, much later. We begin by coming out to ourselves. We begin by accepting who we are and what we are and how we are. We begin by rejecting the definitions that others put on our lives and begin for forge our own. We begin by acknowledging our difference in the face of prejudice, our difference in the face of bigotry, our difference in the face of bias. We lose the language of self delusion, we no longer say, 'I don't consider myself to have a disability.' or 'I only focus on my abilities' or 'I am just like everyone else'.  Instead we begin to speak to ourselves of ourselves as people with disabilities - as members of a community, as part of a movement, as having a place to belong and a perspective to offer. We began seeing who we are as entwined with what we are and how we are and even begin to see then ... the biggest miracle ... why we are.

You signed off your comment on the blog with 'Still In Hiding' but, oh no, you aren't. By writing that comment, by peeking into a disability blog and by staying and by reading, the door was being slowly swung open. You have smelled fresh air ... welcome. I am honoured that you have come here to Rolling Around in My Head. I'd recommend, again presumptuous, for you to read fellow comment makers and follow links back to their own blogs. You will find here readers who are parents, who proudly love their kids. You will find here care providers, who proudly serve and wish to serve well. But, most importantly for you, you will find others with disabilities here. All of whom have made a journey. All of whom have decided to be publicly, and sometimes even wonderfully outrageously, proud.

I would love to hear from you again, sometime, even on my personal email, which you will find over there under the picture of Joe and I, or here amongst this tiny, little, loving community.


Susan said...

My two candles were burning yesterday. One for remembrance, and one for hope..

And Dave was right, Still, there are a lot of us out here who are pulling for you... You are a survivor. And you recognize the real truth when you hear it! (or read it) I am so looking forwart to hearing more from you. You have a lot to give - in one short comment you've already given SO much.

Wenbley Fraggle said...

I've read for awhile, but I've never commented. I'd like to think that besides parents, others who have disabilities, and caregivers, you will also find those who want to make sure that we are doing the right thing for people who have it harder than ourselves. I do not have a disability that is obvious, I am not a parent, and I am not a caregiver, but I read your blog to learn about the cruel things that people do and to make sure I never do them. I want to be caring, and helpful, but not rude or presumptious. I want to learn how to respectfully help or not help those who are in wheelchairs, or who need just a bit more space or time to move. I want to make sure that the cruelties of today do not continue into the future.
I learn all of those things from your blog as you post entries about how people have treated you, and those you know.
I hope this makes sense.
Thank you.

Belly (aka: Liz) said...

Can I just "ditto" everything Wenbley Fraggle said?

Still in Hiding - how my heart aches for all that was taken from you, but how it swells with all that is still to come. Welcome home.

lillytigre said...

I mean no disrespect to your poster. Its more that the comments to you got me thinking. My parents were supportive but I also had to sort of put my childhood to rest. Kids were mean to me most of my growing up years. By the time they stopped being mean I was too hurt to realize for a long time that there were nice people in the world. My point is that I am almost 40 now and I have just started to feel comfortable with me. I am very proud of that. But I wanted to tell your letter writer that if he or she wants too it is never to late to make some of those memories you wish you had as a child. Some of my favorite things have to do with being a goofball. Just don't think ever that being done with your childhood means you can't makes up for the fun that you missed now. I am in awe of the courage it took to write about such a personal and private journey and see many good things to come for you.

Donna A. Menner said...

It was so sad to hear of you living a childhood of being mostly house bound. I didn't know things still happened like that - I guess I thought people were more accepting of disabilities. I know you had the funeral for your childhood because you want to put all that behind you. Have you had a frank and open discussion with your parents on why they treated you like this, or would that be opening new wounds.

Shan said...

In the main, I'm with Donna Menner. I can be very naive, I suppose, about this kind of thing, which in my mind belongs to the vague and unsatisfactory 'past' along with lower wages for women, and the horror of residential schools.

But reading his comment now I am very very pissed off at his stupid parents.

rickismom said...

Dear Still in Hiding:
I am awed by your courage! May you be well.

Dave Hingsburger said...

Wenbley Fraggle, you took my by surprise, you did. I had not realized, until your comment, that I had readers who fell into any but the three main categories, people with disabilities, families of people with disabiliteis and care providers of people with disabilities. I was gobsmacked at your comment and apologize for not knowing and therefore not mentioning those who were here to read, learn and understand so they can 'de better'. You've lifted my spirits and made me think differently about this blog and about what I write. Thanks for 'decloaking' and making a comment.

Anonymous said...

I, too, come here in the same spirit as Wenbly Fraggle. I come here to learn, at best, how I may be of assistance, or at the least, how NOT to be an unthinking hindrance.

And may I say, Dave, that you make learning the lessons a joy, not a chore.


Anonymous said...

I am also in the Wenbley Fraggle camp and am a great admirer of your work and your writing.