Her call was to tell me I had been selected to receive the prestigious Joseph P Kennedy award for leadership. I was to receive the award at the United Nations where her daughter, Maria would host the ceremony. What a wonderful gift to Hope House Foundation, we were being honored by the Kennedy Foundation for having the courage and determination to close all our group homes and support people living in their own home. The recognition felt great and the honor of being selected still resonates today.

At the ceremony she was gracious, opinionated but most of all totally focused on what she wanted to see for people with disabilities, a life of inclusion…..her passion and her influence set a generation moving in that direction. Rest in peace Mrs. Shriver and I as well as so many others will continue your mission

Over twenty-five years ago the Ghent Arts Show, conceived by and benefiting the Norfolk Free Clinic was the premier outdoor show of our area. The funds raised from this event were a significant part of the budget the clinic used to provide medical treatment for those who could not afford it. The show was not only popular but served as a spring celebration for the Ghent community. Held each Mother’s Day weekend I can recall always being torn about traveling out of town to see my Mom versus staying in the neighborhood and going to the art show. More times than not I split my time between the two. In those days the Ghent community was quite different than it is today and much of the renovation and building of more upscale housing was still very far out on the horizon. The Ghent Arts Show truly reflected the community and the Free Clinic operated just around the corner. The artists, musicians, visitors as well as the neighborhood embraced the show and as I recall understood the importance of the event to sustainability of the Norfolk Free Clinic.

Around 1983 there was a huge buzz around the city about the opening of Waterside and the newly formed park that would lie adjacent to this “festival marketplace”, everyone was excited. The vision for the park area included art shows, music events and so much more. Harbourfest would take on an entirely different feel and we the citizens of this city would have a place to call our own. Around this time the Free Clinic was going through its own changes and would within the year relinquish the show to another local not for profit. So, when the City approached them about moving the show to Town Point Park where they would have a larger space with a beautiful view of the Elizabeth River they said yes! The organizers of the show saw the potential to attract many more visitors and to increase their fund raising as alcohol sales would be allowed, something that never seemed to fit within the serene and intimate surroundings of Stockley Gardens.

The decision was made to move the Ghent Arts Show to Waterside, it would still be on Mother’s Day weekend and still carry the same name, the only thing left to do was inform the artists of their new and improved location. I guess no one really thought there might be differing opinions among the artists and the community members of Ghent but of course there were.

A small band of artists and community members began an informal effort to block the show from moving to Waterside. They held meetings, created buttons that bore the slogan “Keep it in Ghent” and sought press coverage of their opposition to the plan. At one of their first meetings a staff member of Hope House Foundation was present and the seeds for starting another outdoor festival were planted. The idea presented to Hope House Foundation was that we would create the alternative show, keep it in Stockley Gardens, hold it the weekend after Mothers Day and most importantly maintain the neighborly culture of the event. The first Stockley Gardens Arts Festival was held in May of 1984. We had about 30 artists, a few bands and loads of optimism. We didn’t make much money, but we did make a statement. Our entire mission was about inclusion and this action represented all of what it meant to us.

It seemed then as it does now that we did the right thing. We were responding to our community not only because this type of event was valued but also we at Hope House were not separate, this community included us. At one time we operated three out of our four group homes in Ghent. We found the neighborhood to be welcoming and open to people with disabilities, and even now after closing all of our group homes and supporting people in living in their own apartments we still find this to be a place that embraces diversity.

The success of the Spring show took a few years and led to the creation of the Fall Stockley Gardens Arts Festival and again this decision was made though collaboration with the artists who explained to us that the outdoor artist circuit would be coming to a close mid October and they knew of no better place to end it than where they began, in Ghent and in this park.

How fitting that a small group of people wanted their opinions and voices heard and that it was us, at Hope House that listened. It’s the most important aspect of the work we do with people we support, the art of listening. Listening for the subtle messages that may be expressed in a quick expression or movement to the large pronouncements of dreams and ambitions. It’s fairly easy to “hear” someone, but to understand a person only listening really works which requires the opening of one’s heart to another.

The Ghent Arts Festival is long gone yet Stockley Gardens Arts Festival continues to hold a vibrant place in the heart of Ghent. One of the ongoing jokes we hear is that no one really knows who puts on the festival or why, well now you do.

Please join our organization as we celebrate this 25th year anniversary of an arts festival that believed in itself and knew it belonged in its own neighborhood, and with the help of friends, patrons and supporters such as you this was achieved beyond anything that was imagined a quarter of a century ago.

The process may be a little different for people with disabilities to have the same kind of achievement but maybe the ingredients are exactly the same.

At Hope House Foundation we place a high regard on relationships, not only among our board of directors, staff and those we support but also with our community. If someone told me tomorrow that Hope House would be located to say, New Jersey, what would become of this agency? We would be a shell of what we once were, because the tapestry and fabric within this organization is interwoven and sewed together by the people that care about us, without them, Hope House is not Hope House. We would lack the meaning not to mention enthusiasm necessary to continue our journey in the same way. You cannot replace 30 years of building friendships, creating a home, and most importantly understanding about who you are and what you want to become very easily…. if at all. Things that make sense are trust, love, support and the uniqueness of each relationship we have and ever will have. I suspect if you are reading this then you too have a relationship with this organization, maybe its been ages since we have seen one another or just yesterday, all are important to us and shape who we are and who we want to become.

So yes Virginia, do continue this effort to put large congregate institutions in our past, where they belong, but not the people who have formed strong ties and irreplaceable friendships, hold them scared and important because in doing so we will create hope with meaning.

This week in the Virginian Pilot an article by Elizabeth Simpson appeared on the subject of waiting lists for Medicaid Waivers in the State of Virginia for people with disabilities. I know Elizabeth and respect her greatly. Her writing style and ability to convey complex issues in a human light is uncanny and she consistently picks up the gauntlet and writes stories most of our community rarely considers and often times don’t care about.

This one was no exception. She clearly explained the system by which people with disabilities can access services in my State and she clarified why the granting of 600 new “slots” puts little more than a small dent in the ever growing waiting list that now represents 6000 people with disabilities. In the article she clarified that if you have a label of autism or have a brain injury that no new slots are granted at all and she exposed the disparity of the system in prioritizing people’s needs based on where they live. If you are in an institution run by the State more funds are available to you as is more support, if you are living at home with your family then tough.

The only disagreement I personally had with the article was this sentence; “A Medicaid waiver would allow him to move into a group home and receive services that could provide more socialization and job skills. Ann Christie says her son is eager to move out on his own, and she’s worried he’ll lose some of his skills if he spends too much time at home.”

A Medicaid wavier would also allow her son to choose Hope House Foundation instead of living in a group home. We closed all of our group homes 17 years ago in favor of true individualized services that place the person with the disability in the “driving seat” so to speak in directing their own lives. What better way not to lose your skills than to be afforded the opportunity to live your life as an individual based in your own home versus in a group home based on labels .

So here in Virginia we have 6000 people with disabilities, not to mention their families and friends all wanting 400 passes to freedom. So the test becomes who is most needy and who has the most justifiable emergency situation. So typical of the State, crisis management. No need to be proactive, let’s just do as little as possible and only for those who are in crisis. How about the folks who as adults want to live outside their family home, or those who have ambition and want to contribute? No room at the Inn of Inclusion for them. This same approach was most striking in the aftermath of the Virginia Tech shootings. The lawmakers agreed that now it’s time to get serious about this broken and under funded mental health system. The sweeping speeches and outrage still produced so little to prop up this abysmal system.

The only way to get service in this State is to be an emergency. So pull out the sirens, get your flashing lights and move swiftly down the road of bureaucracy, because if it’s not a crisis then we need to keep doing what we have always done in the Commonwealth, as little as possible.

A season of hope and adventure is what I long for and one that I most certainly want to contribute to, professionally and personally. Hope for the State of Virginia to finally make honest changes that benefit people with disabilities instead of the incessant committee studies that produce no more than rhetoric and recommendations, but rarely any action. Hope for true human rights and a system that actually understands and supports choice by the people forced to deal with a system that offers little more than a five bed group home and a day center to waste the day in. And finally hope for the thousands that sit on a waiting list year after year seeing a glimpse of the inclusion that most of us can not imagine living without.

Recently a number of people with disabilities were asked what was the single thing they would like to change about their lives……..their answer is not new but worth repetition, friendship. People in their lives who care about them…….simple and in the midst of this season of gift buying, decorations and credit extensions, this is something to put on your list that’s absolutely free, the gift of friendship, taking the step towards the reduction of loneliness, not just for people with disabilities but for all those left on the sidelines. This is an adventure worth going on……one that holds surprise and optimism, as well as good cheer. Tis the season after all.

So today with the cold and the ice I will keep my heart warm and expectant, I will anticipate the excitement of real change and I once again I will commit this soul through the uphill but worthwhile journey of being what I want from this world.

Last year a group of us came up with the idea to focus one position within each team at Hope House on that idea, people becoming part of the community and not just living in the community. We wanted the individuals within these roles to be creative, spontaneous and with a huge capacity to help individuals form networks of friends. We call this position the Community Support Coordinator but I think most folks that we support call them their dream champions. We at Hope House have been so pleased and quite frankly humbled by the incredible success of this effort as I think you can see from the stories in this newsletter.

I believe there is a place between excluded and included that many people with disabilities live within, I also believe Hope House is not one of them because we understand our work here is not just about good services and supports but finding your dreams and having them light up who you were always meant to be.

We have a new law in Virginia that punishes traffic violators who reside in this grand state at a more costly level than those that don’t. Some people think this is downright discriminatory as well as short sighted in terms of addressing the issue. In the disability community almost all the laws and regulations are discriminatory and fail to address the real issues of poverty, unemployment, lack of inclusion and choice. Not following many of the regulations in this industry actually helps people with disabilities to have better lives…go figure, but don’t get caught.

My friend and I established some rules or maybe they are just guiding principals, it’s really semantics because our rules were made together in an effort to define our behavior towards one another and at the same time make sure we achieved certain outcomes. I like them, they are exciting, loving and communicate intentions and anticipation. Having a rule about communication that is honest and clear works for me, I like being able to expect that, hell even count on it.

Sometimes rules can be healing, like a bridge that transports me from one place to another, or adventurous like a promise of fun, no matter what. Nothing wrong with those kinds of rules in my book. Some rules are just plain manners or graciousness, I like those too. I guess the real test of a rule is its ultimate motive or what the rule should accomplish, when I make rules for myself like sitting up straight and working on my posture I rarely question the motive or test its integrity, yet when I establish rules with another person I suppose motive does come up, is this controlling or freeing, confining or releasing, supportive or selfish? With my friend I did not think of these factors, never entered my mind. I think that was because I trust him and when I trust someone those things just don’t take up any space in me. It’s just distant and hard to hear noise.

So maybe we need to dump the regulations that were made for people with disabilities and not with people with disabilities, maybe we need to establish rules between people with disabilities and those they trust and just maybe we need more rules that promise love, adventure and graciousness……now that’s something I could get behind, yep no doubt that’s me in a tree.

I was really not interested in painting them myself, but very interested in them being painted. My friend knew this and without a lot of fuss (well maybe a bit), he set out to make it happen. We need friends like this, people who have the willingness to do something for someone without a lecture of how the person could do it themselves. Of course I knew I could paint the chairs, but the act of friendship is not something you do alone, and that is what took place on a breezy day in May.

So much of our work with people with disabilities is about what they can do for themselves, why we have devoted an entire paper industry towards proving that is all we focus on as if this progress is the only value to hold. Well I don’t agree, sometimes we need a friend who will do something just because……People with disabilities don’t have enough of those types of friends, maybe none of us do, but I’m lucky I have Sam.

“My gripe is not with the lovers of the truth but with the truth herself. What succor, what consolation is there in truth, compared to a story? What good is truth, at midnight, in the dark, when the wind is roaring like a bear in the chimney? What you need are the pump comforts of a story. The soothing, rocking safety of a lie.”
-Vida Winter

I love to read. My Mom gave me that gift as she is one of the most voracious readers I know. My earliest memories as a reader was looking through her bookcase and being awe struck at all the books she owned and the variety of stories they contained. They offered everything, trips to far away lands, the meeting of wonderful and interesting characters and the drama that so naturally unfolds as part of the human experience. Stories of conquest, love, prejudice and hope all within a young girl’s reach in a small southern town.

I like to talk in stories as well, but even more so I like to hear them. Recently I was working within a Mental Health organization in the south of England. I was within a hospital setting for folks who needed that service on a temporary basis. There I met a woman during my lunch break, she wore a plaid long skirt and a lace blouse and she carried a beautiful and ornate pocketbook. Her dress style was so refined that I noticed her immediately.

She introduced herself and picked up quickly that I was from the US. She told me she was a musician and asked if I had time to hear her play. I indicated that I would love to hear some music and she quietly and quickly went to her room and came back with a red, very large case. I could not imagine what it contained as it did not seem to be in the shape of any instrument I was familiar with and I was curious as to what type of instrument would even be allowed in an acute mental health setting such as this one.

She smiled shyly as she opens the case and reveals a red, plastic xylophone and says “this is for you”. With plastic sticks on a plastic keyboard she played The Star Spangled Banner… beautifully. I was awe struck.

When she was done she asked me if I could do a favor for her, would I please speak with her doctor and let him know that she wants to go home, that she is ready “this time”. I told her I would not be seeing her doctor but maybe she should play him a song about home… and what it means to her. She looked up at me as she was replacing her instrument in the case and said, “nope that won’t work, I tried that already”.

I had just spent 10 days working in New Jersey and Philadelphia with various groups of staff members who were dedicating their work life to people with disabilities. They were young, smart and full of vigor and excitement about moving people from institutions in a new and brave manner. The lives they envisioned for people once the system forced itself to really listen to people and what they wanted and dreamed of was moving… weeks like these encourage and motivate my own thinking and memories.

I leave for Manchester, England on Friday, a trip that will offer up the opportunity to spend time with my friends and do work that I love. The dates are marked clearly in my calendar but not the feelings; they are marked in my heart.

As I was paying for my bill I caught her eye and motioned for her to come over, I asked her how she got this job, did she just see an ad, or did someone tell her there was an opening. She smiled brightly and said, “Oh nothing like that, it was a birthday present from Mom, she works here at the airport and she surprised me with an interview here, I was hired on the spot”. So no service system in play here, no righteous philosophy and belief system creating jobs, just a Mom marking an anniversary of birth, an anniversary of celebration.