Many people who have read the thread on Franciscan Mysticism and Spirituality have asked me to start another spirituality thread. I’ve been thinking for a week what a good thread topic would be. You see, my particular area of expertise if Franciscan Mystical Theology, both as a Franciscan myself and as a professor. So I don’t want to steer too far from what I know well and make too many mistakes.
After a great deal of thought I have decided to invite everyone to share on another very important and relevant topic in the area of spirituality that is often overlooked, the spiritual life of families living with disabilities. Today we know more about disabilities than ever before. In the past persons with disabilities were considered different, abnormal, ill, dumb, crippled, handicapped and by many other labels. The truth of the matter was, that very few people inside and outside of the Church knew much about the spiritual life of the person with disabilities and much less of the people living around that individual.
I’m sure that there are people on these threads living with ADHD, learning disabilities, Asperger Syndrome, autism, Down syndrome, hearing and vision impairments, Alzheimer’s, psychosis, physical disabilities and many others. As medical and psychological sciences advance, we come to a greater awareness of these conditions. From a clinical and pedagogical perspective, this is fine and good, because it helps us locate resources for our loved ones.
It remains an area that needs a great deal of attention, the spiritual life of the family living with disabilities. A disability in one person has an impact on an entire family. I’m sure there are several; but I know of three dioceses that have very active ministries to persons with disabilities: Chicago, Washington, DC and Miami. But there is little out there for the families and the parish. Our parish has decided to take a step further. We have begun a ministry to the family and what we have found has surprised us and moved us.
Disabilities take their toll on marriage. There are couples who end up in divorce court, as a result of a loved one with a disability. When one parent becomes the primary care-giver and the other parent is the bystander, the marriage is in jeopardy. When both parents are so involved with the disabled child, the marriage is also in jeopardy. The disability becomes the focus of attention. The couple begins to lose its identity as a couple and the parental identity begins to trump the spousal identity. They spend so little time with each other that they become strangers. Their vocation to the married state is at risk.
If marriage is the sacrament of the relationship between Christ and the Church, nothing else should come between. The intimacy between Christ and his bride does not decrease because of an anomaly in the Mystical Body. It continues, despite the anomaly. Often, couples in this situation focus so much of their time, attention and resources on the anomaly that they never dialogue about each other. Every conversation is about the child.
The prayer life of the couple is strained. Their child’s disability becomes the focus of their prayer. Sometimes the time spent in prayer is significantly diminished because they are too tired to pray. Families often cease going to mass as a family for fear that their child who hums to himself or giggles at stimuli unknown to the rest of us will be a major disturbance to others and that they will no longer be welcome among their fellow Catholics as a family unit.
The disability is a portal toward a more perfect union with God not a new god. All attention is focused there and God falls into the background. Or God is punished because parents are angry at him. They feel abandoned. They feel that if God really loved them and their child, he would fix the problem and make it go away. They have a great deal of difficulty seeing their child’s condition as a different kind of perfect.
Two weeks ago I was at mass. There was an autistic young man in the same row as I was. I could tell that he was autistic because he continued to perseverate on the typical hand gestures of people with autism. His autism seemed to have a co-morbid mental retardation, because he soothed himself through the entire mass by humming. A few rows behind me was another young man with Down syndrome. He laughed every now and then. I looked to see what was funny and could not find the cause. My heart broke when I noticed the faces of those sitting around us. There were people who were genuinely upset by this innocent distraction.
Having ministered to this population since the 1960s and being the widowed parent of a 19-year old with autism, I was neither surprised nor bothered by it. I looked around and realized what was going on. I smiled to myself and remembered something that the late great James Herriot wrote in one of his books on his life as a vet, “And the Lord God made them all.” Once I said that, I was able to get back to my mass and forgot all about our two brothers until it was time to go to communion. They happened to be one in front of me and one behind me on the communion line.
As we left the Church, one of the parents recognized me as the Brother who runs the ministry for families with disabilities and said hello. I greeted the parent and the son. I asked the son if he had enjoyed mass. He said, “I got to eat Jesus.” My day was made. Like Ann Sullivan said about Helen Keller when she discovered the meaning of w-a-t-e-r, “She knows!” He also knew.
I would like to see more Catholics share their experience of the spiritual life and disabilities. We can help such families on by this thread and also help other Catholics to be more aware of these needs and be more welcoming.