• Previous Entries

Homer, Alaska

• October 28th, 2006

I’m working here. Besides the stunning vistas, the moose hanging about the venue and some of the most eclectic folks in any one community there’s something else about being here. The mountains set the stage with a horizon that screams beauty and the unbelieveable power of pure nature. Wilderness here redefines wilderness everywhere. Eagles so large they walk around like short people and stars that I have never seen create a feeling that someohow everything is in its place. I can hardly name it, but I think it comes close to gratitude, being thankful that I have opportunities like this to not just experience the differences, but the sameness as well. I also think it borders on forgiveness as well, maybe for me, and certainly towards others. Folks here are trying to figure out how to fill the gap between who they are and who they want to be. The age old feeling of being under siege from state bureaucracy and inadequate funding. Working under extreme conditions with supreme efforts. I am facilitating three days of strategic planning for a not for profit, supporting people wih disabilities, but what I am really doing is fully and clearly offering belief in people and what they do, they deserve the encouragement, I guess we all do. Tomorrow I go dog sledding, it will feel good to follow.

Learning to Lead

• October 19th, 2006

Of all the tyrannies, a tyranny sincerely exercised for the good of its victims may be the most oppressive. I think this expresses my sentiments precisely. I was discussing this very idea with a colleague of mine this morning. Robin agrees with its message but also is wonderful about sharing the opposite of this perspective. She finds most of her examples, if not all right here at Hope House. I not only appreciate this, I need it. It’s not that I don’t see all that is right and life affirming about the support that we offer folks with disabilities; I see it often. I live in and share the same community, pay attention most of the time, but more than I care to admit sometimes to the wrong things. Well maybe not wrong but misplaced or too heavily weighted in regards to my focus. I think people in my position get in the habit of concentrating on what’s not right, a life that is still not supported in a way that appears to work or produce joy or self direction…..I get caught up in problems. I read once that if you seek to lead then you seek to solve problems and if you don’t accept that it’s like playing baseball and not wanting to step up to bat, or practicing medicine and not wanting to treat the disease. I suppose I believe this, leadership deals with filling the gap between what is and what needs to be, maybe that is how I have always sought to fill this role, maybe there is so much that I still believe must change that I am unable to lead in any other way, its habit, familiar, like the love of your life or the perfect blanket… complex and simple.

Robin and I talked about a new approach to providing our monthly report to our funders and board; we want to stop listing what the people we support do and start writing stories about what we are learning. Robin wrote the first one, it was moving and brilliant. I told her so and her response wa that she could write hundred more. I needed that.

Art Thief

• October 10th, 2006

Ok so here is the age old question, what is art? Who owns it? Why? They are complex questions on a wide scale and simple on a narrow one. It was suggested to me recently that I write an entry with this title, I was leaning towards “Love of a Cowboy”, but thought since this was someone who knew me well and had much love for me, well what the hell I’d give it a shot.

Stealing art, is it really possible? I mean does not art reside in the artist? I realize that in some art forms are tangible on the physical level, a painting, sculpture, or a play…but how does one really steal it? The vision of the piece seems to always sit with the artist or a person who collaborates with the artist to produce a commissioned work. When art fails to convey the intended meaning of its creation, it’s not stealing its righting the cosmos or in other words creating integrity, placing the work in a place it belongs. Art to me lives in truth just like love.

Rhythm and Blues

• October 9th, 2006

By Dave Hingsburger

I think it’s the smell I remember most. Captivity reeks. It stinks of decay, of disuse, of disenfranchisement. I left by the side door and could hear the echo as the door slammed. I left for me. I’d like to say that I left for them, but I did not. I was afraid of what would happen to my soul if I stayed even another day. Even another hour of med cupboards, time out rooms, strap downs, lock outs would have been too much. One more glance from fear filled eyes would have been my undoing. There is a hierarchy in institutions that is firmly established. There is us. There is them. There is no bridge between the divide.

I thought of that yesterday at a conference in California as I was talking to a self advocate, who was sitting with her boyfriend and talking to me of her daughter and her job. She’s a bright blond woman with an infectious laugh and a backbone of pure steel. She’s one of the ‘always free’ - the new generation of people with intellectual disabilities who grew up expecting more than captivity. She gives me reason to believe that we, the community living movement, are on the right track. Pursuing real lives for people with real potential - acknowledging both the disability and the dream. Difference and sameness.

Sometimes it’s hard to shake the memories from those first days in that institution. Of the staff who had become addicted to power, who loved being atop the heirarchy, who had keys that locked in and locked out at the same time. I remember a meeting about a young man who was a tad bit of a problem, he was unbowed, he stood defiant of our authority and asserted his own. We met with ideas to bring him down. To let him know exactly, I mean exactly, where he stood and precisely, I mean precisely, who we were. There was such an air of anger in the room. It stank.

Then, now. I’m in my wheelchair at a retreat. Hundreds of staff are gathered to celebrate the work and to challenge the future – bring it on. We are broken into groups and all have to come up with a song that reflected the work that we do and the goals of the agency. Our group decided to make a play on the song Y - M -C - A and change the lyrics so that the song would be called H - O - P - E. There was a joyousness in the air, a real pride in the work done, a sense of service, an understanding of vision. We performed our song and watched others take liberties with such classics as We Are Family and a beautiful teary Lean on Me. These people had rhythm but there were no blues.

I’m not sure what Hope House did to deserve these staff with their wild energy and their untamed spirits. I’m not sure what magic brings them together like this and holds them with a vision. The echo of the institutional hallway should never be forgotten, this is where we came from. But the door that closed on the institution is the one that opened on the community. This is the house we live in now. And if you tip your nose and take a breath that’s the scent of fresh air you smell. Freedom smells like laundry dried in the great out doors. This is what we claim. A woman in California with a real life, a group of staff in Virginia with a real vision, a guy from Canada with disturbing memories - what brings us all together is that we’ve all ‘Got Hope’. And we’re all using it.

Manchester

• October 4th, 2006

I have a beautiful companion, he does not lie, cheat or attack me (well sometimes he will playfully bite me). I have grown to know him over this past year, his quirks, interests, food preferences, talents and his overall demeanour. He has a strong personality at certain times and in my humble assessment he has an uncanny ability to sleep comfortably with me and tolerate my erratic habits when in slumber. Quite simply, I love him.

Recently my organization has conducted a number of meetings on the subject of relationships, romance and sexuality with people who experience disabilities, family members and staff. It’s been such an insightful process and I have learned so much. I think the most profound insight has been as usual, from people with disabilities, their experiences with love or the lack there of has once again forced me to re think so many assumptions.

At one of the meetings I had a conversation with a woman who spoke about her mistrust of this thing called love. She explained in the past she had a boyfriend who had lied to her, cheated on her and ignored her and based on this one experience she felt love and companionship was just too painful and in general a discouraging thing to pursue. I talked at length about the lies and betrayal not being about her, in fact just the opposite, it was about her ex-boyfriend, but try as I may, she still suffered and at some level felt badly about herself. She told me she still loved him, which was the most startling aspect of her story.

I suppose upon reflection she is not that unusual, in fact maybe this is quite common. I’m not sure, but what I am sure of is when one finds they have landed in this most untenable position, then the only course of action is to take back your love, and fill your heart with forgiveness. So many people with disabilities do this as a matter of daily life. Living in the service world provides amble opportunities. Staff turnover, terminations, uninvolved families, broken promises and a system that is person centered in language only weaves a daily web of mistrust. Where does a more fertile ground exist for disappointment? I know of none, especially when false integrity is shouted and proclaimed at every question or criticism.

My cat Manchester knows nothing about these things; I wish I did not either.