The Heart of it All

Last Thursday Daniel and I had dinner in one of the homes at our local L'Arche. It's a place where people with intellectual and physical disabilites live in community with the help of assistants. We shared vegetarian chili and cornbread with a group of about 12 in the Peace House. As a child of the sixties, everything about this scene appeals to me.

L'Arche is a revolutionary way of thinking and living. Jean Vanier started the movement in France when he opened his home to two men with disabilities in 1964. They were institutionalized at an early age, and when Vanier saw the conditions they were living in, he decided to do something. It's grown steadily over the years throughout Europe and North America. There are 17 L'Arche communites in the U.S. right now, with 3 more in the process of being up and running.

As a young man, Vanier did his doctoral thesis on Aristotle with a focus on happiness. His research boiled down to a very simple conclusion. The secret to happiness? Loving and being loved. That's the mindset that L'Arche grew from. From the International Charter:

"L'Arche exists to strengthen our local communities, welcome more people into our life and work, engage in advocacy on behalf of those often on the margins of society, and to raise awareness of the gifts of persons with intellectual disabilities."

"You may have a spiritual resonance with L'Arche's vision of mutuality and solidarity with persons who are marginalized, a desire to immerse youself in community, or a sense that there must be something more to life."

Peace House

Daniel

Welcome

One of the gardens

The backyard between houses

L'Arche is radical. It's radical in insisting that money, prestige, career, intelligence and all of the other things that we usually associate with success are not what make us happy. There's a different mindset in the L'Arche world. The prevailing philosophy doesn't glamourize disability, but accepts it as part of life, part of being human. Our IQ score isn't what counts. What brings us happiness is loving relationships.

It's been over a year since Daniel and I were there, and I was surprised that people remembered us. By name, no less! Sister Rita held his hand during songs and prayer at a service before dinner. She spoke to him, not about him. The same thing happened again and again. No pity, just welcoming and appreciation.

I came home from work very tired that Thursday, and I had to talk myself into going. I am not naturally social, and it took effort to go and not slip out before dinner. I kept up a steady internal pep talk that went, "Stop thinking about yourself. Relax into this. Just observe and be open." I'm glad that I did.

It's important for me to be close to people who view life this way. I need to cultivate friendships with those who believe that everyone has something to share and a purpose in being alive. I have a group of close female friends scattered across the country who choose to view their kid's disability as a part of life and not a tragedy. We started as a Yahoo group, and eventually moved to Facebook. We keep journals that circle the states so each of us can contribute. We've consciously decided to share a perspective that takes things in stride, including seizures and surgeries. We met online in the late nineties when our kids were babies. One of my closest friends in the group moved to my city in 2004.

We need people who nurture us on this path. I've written before in this blog about my deep desire to have a community where families can live in houses close to one another and share the life of raising children and caring for adult kids with disabilities. Since that's not possible right now, I need to approximate the emotional and physical support to the degree that I am able.

I love waking up to my son everyday. I don't ever want him to live elsewhere. I realize that I'm getting older, my back is getting weaker, and the natural order of things is for children to outlive their parents. If that day comes, I pray that the L'Arche model is more common. That it is the rule, not the exception.

For now I just need to do my part.



The Key to Survival

In past posts I've talked about my fantasy of communal living for families who have kids with disabilities. The happenings at L'Arche are always on my radar. I also found Noah's Ark in Florida during one of my web surfs.

Both have a lot to offer. The problem is that they are for adults with disabilities who live away from home. My real interest is in a place that is created for parents and kids to live together in a community of like-minded people. Hence the commune image that won't leave my mind.

When Daniel's big sister was a baby, I got involved with the Waldorf education program in my city. I hung out with a group of moms who were part of the original initiative to get a school started here. I loved it.

Waldorf living means (in part) no television, specific types of toys that emphasize natural materials, and a focus on play for the young child rather than academics. It's tough to live in the real world and maintain such a strict lifestyle, but worth it if you can manage.

I incorporated some of the ideas I learned in my Waldorf days while Melody was a toddler, but it gradually went by the wayside and my kid watched Disney movies and played with Barbies like everyone else in the neighborhood. I didn't have the commitment it took to carry it out, and her father was not really enthusiastic about wooden toys and the absence of cartoons. (Still, until just a few months ago, Daniel slept on the lambs wool that I bought from one of their catalogs, and our kinder harp is in the living room next to the piano.)

Anyhow, 16 years later I discovered that Waldorf has a program for kids with disabilities. The one that intrigues me the most is this one. The downside to the program is that it's a residential school, not an intentional community that would include families. I like what they're doing, though.

I guess my vision is of a L'Arche/Noah's Ark/Camphill School that is made for families. One of the hardest parts of raising a child with multiple disabilities and unique medical needs is finding good help so that it's not all on a parent's shoulders. The best times for my family are the ones when my mom and dad are with us. We share the work. We enjoy Daniel without getting burned out or boring him. It's because we are doing it as a team, and everyone is fully invested. (And we love him more than life itself).

My dream is to lessen the fear of "what happens when I die" by finding or creating a place that eliminates the isolation that exists in our separate houses with our friends and family spread out over the map. For me, sending Daniel to live elsewhere is unthinkable. I understand that it's necessary for some parents, and I appreciate the agony involved in making the decision.

How beautiful it would be to live our days enjoying our kids with the support that assisted living gives. Forget about agencies and paid care providers. I want people around me who are in Daniel's life not for the money, but for the relationship.

Idealistic? Probably. But I really do think it's key. Right now I don't know where to start to make this dream real other than by giving it lots of time to incubate. Oh, and put it out there so that any of you reading who share these thoughts and want the same things can add your .02.

The Boy in the Moon

I wrote my last post, Gifts and Gratitude, after listening to part of an NPR author interview with Ian Brown. Brown discusses life with his disabled son, Walker, and his book, 'The Boy In the Moon'.

The interview stirred up a lot of feelings within the disability community because of a comment he made about "disability masochists", which he defined as people who make their disabled child the most important, indeed the only important thing in their lives. He also said that he hesitated to write his book since he'd been turned off by some of the "misery memoirs" he'd read over the years.

After listening to part of the interview, I read some of the blogging going on about his comments. I found some wonderful, intelligent, very outspoken people out there who are raising severely disabled children. They weren't letting Brown get off easily for those unfortunate labels! I'm glad they were able to succinctly say what I was thinking.

I also turned to my Nouwen library to try and clarify my own thoughts about the worth of a life lived with severe limitations. I blogged a little about L'Arche, and what that philosophy means. It was a tiny touch of what it means, by the way. I'm so busy with day to day things that I don't have the luxury of writing as much as I'd like to.

Finally, I ordered my own copy of Brown's book so that I could put it all in context. Wow. What a cool find!

There is an entire section on his experience with L'Arche, including time spent with the founder of the movement, Jean Vanier. I don't know if he spoke of this in the NPR interview, because I never found time to listen to the entire thing. I had no idea that Brown was influenced by this community of people who live together, disabled and non-disabled. It was fascinating for me to read, although I must admit that I only got the book in the mail yesterday, and sped through it as fast as I could last night, due to very tired eyes and body. (Geez, I'm sounding pretty attention-challenged. I didn't listen to the entire NPR interview, and I skimmed the book. I plan to remedy both during my summer break. Being a school nurse has it's advantages!)

When I first read the term "disability masochist",  my honest fear was that I might fit his definition. It's not a nice label, no one wants the word "masochist" applied to them (no one I know, anyway). It didn't take me long to realize that there is nothing masochistic about my love for Daniel and the enjoyment I get from living with him and caring for him. If someone doesn't find this life fulfilling, then perhaps it could be seen as self-torture to continue on out of duty alone. Not in this home, though. 

In the end, I think it's an unfortunate term. His book is good. It's very thought provoking and well written. Brown is a writer by profession, and he tells a fine story.

Disability masochism is not really the important conversation to keep going. And for the record, I have never met anyone who fits the description. The parents I've encountered balance their lives the best they can. Having a child with extraordinary needs does make a huge difference in how you are able to organize your time, but it doesn't always have to be as limiting as might be imagined. I'm only speaking from my biased personal experience.

There are more compelling discussions that his book can and should bring about.

I love Brown's words on page 270.
     "These days I have a fantasy of my own. In my fantasy, Walker and people like him live in a  L'Arche-like community, with the help of assistants. It's a beautiful place, in a beautiful spot, with a view of the sea or the mountains, because for once, in this place, it isn't just those who can afford them who have access to the best views, but people who might need beauty even more, because they live with so much less. In my fantasy, this village is owned and inhabited by the disabled, on their schedule, at their pace, according to their standards of what is successful--not money or results, but friendship, and fellow feeling, and companionship. In my fantasy, it is the rest of us, the normals, who have to be "integrated" into their society, who have to adapt to their pace and their place. I can leave, I can go back to my more pressing and ambitious and even more interesting life, but I can also return to live with Walker, as Walker lives--slowly, and without much of an agenda beyond merely being himself."

Now, on to read Brown's book more slowly on this Saturday morning, and indulge a few of my own fantasies for the future. After all, nothing happens unless you first dream it.