Raise Up the Roof: Families with disabilities belong at the synod too.
‘Be careful, Mom, I don’t want you to fall,” my son Joseph said to me as he reached out to take my hand on an uneven Cape Cod shoreline. This might not be an unusual thing to say if Joseph were an adult and I were retired, but Joseph has just started kindergarten, and my retirement is a long way off.
In some ways our family is a lot like many other Catholic families. My husband, Gary, and I have been married for just over seven years, and we have two children: Joseph, 5, and Margaret, 4. In fact, according to the standards of the upcoming extraordinary Synod on the Family, we are quite “regular.” But there is something unusual about us. We are a family with a disability.
In 1968 my parents had a regular Catholic family too. They had been married in the church almost 12 years earlier, had six children already, and I was on the way. I showed up two months early and spent my first eight weeks in the intensive care unit. Eventually diagnosed with cerebral palsy, I learned to walk at age 4, after surgery and lots of physical therapy. Before I learned to walk, my parents and my brothers and sisters carried me wherever I needed to go: to nursery school, to church, to friends’ houses. Everywhere. It made perfect sense to me. I thought we were just like everyone else. And we were. We went to school, went to Mass, played sports, sang in concerts and had Sunday dinner with my grandparents. But we were also different: my siblings stuck up for me when kids at school teased me about the way I walked, and they argued over who got to help me with my exercises and strap on my casts.
When I was 6 years old and asked my mother at the kitchen table, “Mom, why did God give me cerebral palsy?” she prayed to get the answer right. Thankfully, she did. She replied, “Maria, I don’t know why you have C.P., but I do know this: God gave you a great capacity to love.” And that is what families with disabilities have, a great capacity to love—each other, certainly, but God’s world as well. The challenges and joys that families with disabilities experience while living our faith express the paschal mystery in a unique and powerful way.
Embodying the Good News
Families with disabilities are prominent witnesses to Jesus’ healing love in the Gospel. Think of Jairus’s daughter and the centurion’s son. Lazarus is brother to Martha and Mary. A Canaanite mother pleads her daughter’s case. And when the disciples’ faith is not great enough to heal a fathers’ only son, the father brings the boy to Jesus. We know them all in the context of family.
And even where no particular familial relationship is mentioned, persons with disabilities are often presented to Jesus by others who care. Such is the story of the deaf man with a speech impediment (Mk 7:31-37). Presumably his friends call out to Jesus on his behalf. Jesus heals in the midst of the community, for the sake of the community. In the Gospel narratives, Jesus’ powerful and efficacious love moves beyond the individual, beyond the family. All those who witness God’s healing love at work through Jesus become an evangelizing force in the wider world.
Things are not so different today. Families with disabilities still tell a story of faith, hope and love. Faith that in the mystery of human suffering, we find and make meaning; hope that, filled with the Holy Spirit, we can continually seek the magis, moving beyond human expectations and limitations. The love we embody is the very sort of love that the bishops describe in the working document for the upcoming synod and which they hope today’s young people will understand: “not an overly romantic idea that love is only an intense feeling towards each other [but] that it is, instead, a personal response to another person as part of a joint project of life, which reveals a great mystery and great promise” (No. 85).
Families with disabilities live this kind of love daily. There is nothing romantic about staying by the side of a long-hospitalized child or helping a spouse use the bathroom, but these are some of the many ways that families with disabilities respond in love to one another in the joint project of life. We are committed to one another in good times and in bad. We have to be.
Families and communities that include people with disabilities live in contrast to the individualism and isolation the document so clearly condemns. We embody interdependence in a powerful way. In my parish, a member of our choir is blind. For over 20 years she has taken the arm of another musician to enter and exit the sanctuary to sing.
A few weeks ago, I saw two teenagers in our parish guide a classmate with Down syndrome up to the altar, where they all received the blessing given to students moving from the junior high to the senior high youth group. And every Sunday I lean on my husband with one hand and guide my son or daughter with the other as we all approach the eucharistic table together. Every day, in our neighborhoods, our parishes and our schools, families with disabilities both depend on and support those around us “so as to counteract the idea that love is something lived apart from the community” (No. 85).
What makes us human, valuable, loved by God and worthy of the love of our brothers and sisters? Each and every one of us is created in the image of God and is unique and unrepeatable. Under the heading “Critical Situations Within the Family,” the working document reports, “Many bishops’ conferences are greatly concerned about the widespread practice of abortion,” stating “in many ways today’s society seems to promote a culture of death regarding the unborn and to manifest an indifference in approaching life in general.”
Families with disabilities are a witness to the power of life. We embrace it, hang onto it and fight for it when others might say it is not worth the fight. We love our children and our parents, our husbands and wives, regardless of their abilities to walk, talk, see, hear, think and sometimes even love us back. In the face of consumerism and individualism, some of the external pressures on today’s families mentioned in the document, people with disabilities and their families know that what abilities a person has or skills they possess will never be as important as who he or she is. Families with disabilities reject the culture based on the senses and immediate gratification that the authors of the working document bemoan.
Of course people with disabilities sometimes envy the intellectual prowess or physical strength of our more able-bodied brothers and sisters, and our families may envy other families’ seemingly less complicated lives. Like St. Paul, we have prayed that God would take away the thorn in our flesh. In faith, like Paul, we receive God’s response: “My grace is sufficient for you, for power is made perfect in weakness.” In response, Paul proclaims, “So, I will boast all the more gladly of my weaknesses, so that the power of Christ may dwell in me” (2 Cor 12:9).
Every time we go to Mass in wheelchairs, use our hands to sign hymns or walk with our developmentally delayed children to receive Communion, we boast with Paul. When we reject the shame that so many would cast upon us, the shame that we have learned to take upon ourselves, we boast. And in doing this, we do what Jesus did, we offer our broken bodies for the sake of others. We embody this truth: that no one has to be stronger, smarter, richer or more beautiful than others to be loved by God and welcomed into God’s family.
Opening Doors (and Sometimes Roofs)
Two of my favorite healing narratives involve people contending with crowds. In John’s Gospel there is a man who has been ill for 38 years, trying to make his way to a healing pool in Jerusalem. Jesus knew he had been waiting there a long time and asked him if he wanted to be made well. The man responded: “Sir, I have no one to put me into the pool when the water is stirred up; and while I am making my way, someone else steps down ahead of me.” Jesus said to him, “Stand up, take your mat and walk” (Jn 5:7-8).
In Mark, when word gets out that Jesus has returned to his home in Capernaum, he is mobbed. In an effort to reach Jesus despite the crowds, a paralyzed man is lowered through the roof before him.
When Jesus saw their faith, he said to the paralytic, “Son, your sins are forgiven.... I say to you, stand up, take your mat and go to your home.” And he stood up, and immediately took the mat and went out before all of them; so that they were all amazed and glorified God, saying, “We have never seen anything like this!” (Mk 2:1-5, 10-12).
In the midst of these events, the scribes debate over whether Jesus can forgive sins. Even today these verses often stir another debate: whether disability should be equated with sin. As far as I am concerned, that question is answered in John 9 (“Neither he nor his parents sinned; it is so that the works of God might be made visible through him,” Jesus says of the man born blind) and needs no attention here.
For me, this narrative of the paralyzed man, when contrasted with that of the man at the pool, brings up a much more important and timely question: Are we going to be the kind of church that politely ignores and quickly moves past the concerns of families with disabilities, or are we going to tear open the roof to proclaim and welcome their presence?
The bishops participating in the upcoming synod have an extraordinary opportunity. By specifically recognizing families with disabilities, our challenges and contributions, they, like Jesus, can recognize and celebrate members of the body of Christ who have been ignored or forgotten in our church for too long.
Families with disabilities uniquely do every day what Pope Francis hopes the synod will do for families in the church: demonstrate the importance and value of lifelong commitment in the context of the larger community; show that human value comes from who we are rather than what we have or what we do; and proclaim that the power of God’s love in Jesus can heal the deepest wounds, in ourselves, in our families and in our world.