Standing off in the distance, they try to let us know they care – that they are there for us, but in the day to day grind we feel alone. Abandoned. Rejected. We wonder why God caused this disability or this tragedy to come upon us. We wonder what God’s purpose could possibly be in the midst of all of this.
Through the love and support of core members, I have become free to be a broken person and to experience healing.
We are not the only ones to feel out of place and out of touch with society. As if we are misfits or standing on the margins while life goes on around us. For some of us, this experience might have been contained solely in our junior high or high school days. The days when we had just reached puberty. Hearing the boys start to have cracked voices and worrying about growing facial hair. Hearing the girl’s concerns that they were fat or unlovable. Wondering why they were the only one not asked out for the junior prom date. Our faces riddled with pimples which even the strongest acne cream did not seem to subside.
Others of us live in this reality today and may for the rest of our lives. Visibly we look different. Perhaps a disability. Perhaps the fact that our skin tone doesn’t match that of the privileged. Perhaps it comes only in our speech – a slight impediment, but noticeable enough to those around us. It makes us want to curl up and not speak in front of others. Maybe our marginalization comes in the form of an illness. People worry that they might be able to “catch AIDS” and so they leave us alone.
People worry that a bipolar person has multi personalities and is dangerous and so they want to keep a safe distance just in case our shadow side comes out. People see us as weak and fragile, they aren’t meaning to hurt us, but they simply don’t know what to do. That not knowing, is sometimes more painful to us than having someone say something completely stupid but not meaning it. Sometimes we wish we were just like everyone else. Sometimes we question God wondering why we had to suffer this plight.
I work at L’Arche Daybreak, an intentional community in Richmond Hill, Ontario, Canada (close to Toronto) for people with developmental disabilities. At Daybreak, I have come to know the writings of theologians Henri Nouwen and Jean Vanier and have come to hear their heart for people who have various types of disabilities. I have also been able to experience living with 5 core members (residents) in my house who have Down syndrome, autism, and cerebral palsy. Living life together with them is not always easy, however, it has been one of my most eye opening and positive experiences that I have ever received in my life.
When I first began my work at L’Arche Daybreak, I was really discouraged from pursuing this type of work by many people in my life. Even today, there are some people who I really respect who put down what I am doing or try to discourage me from staying on. Before I began my work in Toronto and even now, I have heard so many people use ableistic language and refer to “us” and “them”. They call my friends, “those people”, and they make it sound as if they are somehow less important than others.
Another very common tendency that I come upon is people who think that I am a saint because I work in this field. It feels strangely uncomfortable and out of place to think of myself as a hero simply because I work with people whom society has unfairly shunned, but in reading Vanier, Nouwen, and in talking to my co-workers I realize that almost everyone at L’Arche has experienced this in one way or another. At first, it used to really bother me. I didn’t want people to see me as a “saint”, but rather just as an average person.
One day this whole “saint” notion got me so upset that I ended up speaking to a man I went to seminary with who had worked at L’Arche for 12 years, what he said has shaped and will continue to shape the years that I work in this field. He said to me, “we are not the patient ones. Our core members are the patient ones. They have a 21 year old coming in to L’Arche telling them what to do and then leaving the next year.”
So often there is a tendency for people to think of those who have disabilities as children or as someone inferior to the rest of society, however, at L’Arche our motto is to treat everyone with dignity and respect. The core members we have are adults and will be treated as adults. They will be allowed to make their own decisions and aids will be given to them if they need help in decision making. They will be allowed to foster friendships and romantic relationships and even to have sexual relations or to be married if this is what they want. Here at L’Arche, we will try to make whatever the dreams of our core members are into a reality.
In my house, there is one young man who is madly in love with another core member. Although both of them have a developmental disability, I have never once doubted the care that they have shown to each other. In speaking with Frank (the man from my house) I have learned of his desire to be married to Anita and he has even gone into great detail about the preparations for his wedding.
In our society there are so many voices that say that this should not happen. There are so many people who think that people with disabilities should not be able to be married or have children, however, in working at L’Arche I have seen that all people desire love and many people desire romance. Therefore, just because someone has a disability should not hinder them from finding deep meaning and purpose in their life through sharing it with someone else. In fact, every day that I see Frank and Anita together I think about my own life and about the relationships I have had and I realize that there is so much my future spouse and I can learn from them.
When I think back to that phone call I received two months ago from my friend telling me that L’Arche wasn’t for me and to come back to the seminary, I feel the pangs once again of a broken person who was unable to recognize her brokenness. Just like Nouwen who frequently uses the phrase “Wounded Healer” in his writings, I have come to discover that I, too, am a deeply broken and wounded person.
I have come to see the disabilities in my own life and the fragmented relationships that have resulted from a society that does not understand all that I struggle with. I have come to learn that my friends at L’Arche share more in common with me than many people on the outside. Yet, instead of choosing to be resentful and bitter about their disability, instead of seeking revenge towards the bullies they grew up with or being too fearful to try new things, they have instead chosen a life of compassion and quiet dignity. They have chosen to be productive members of society and all around friends. Through their love and support I have been able to be free to be a broken person in the midst of them and to experience healing.
Every day, then, I am giving the choice: whether to enter into my disability and share my life with them or whether to stay on the fringes as an ableistic person who sees myself as somehow better. Either way, the truth is that I am wounded myself; the only difference is in how I choose to acknowledge it.
Deborah Ferber wrote this post in November 2013, when she was a live-in assistant at L'Arche Daybreak in Toronto.