Disabilities And The Spiritual Life


#1

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.

Fraternally,

JR :slight_smile:


#2

God bless you for your great work!

I just wondered if I might share something with you about a particular family in its approach to handicapped children.

When you spoke of the sad outcomes that can occur in families where there are children with disability, my mind immediately went to my sister’s family. My sister has a serious auto-immune issue, but has a great spirit. She homeschooled her five children, and four have already gone on to complete university degrees, one of the girls has post-graduate study relating to care of handicapped children.

Cheerfully and with careful aforethought, my sister and her husband also adopted two handicapped children, My sister so welcomed the first, a down syndrome baby, that she lactated and was able to feed him for several months. Any medical emergencies were treated with great love and this child, now in early teens is a happy boy with a quiet loving wisdom despite his disability. The second child whom my sister and her husband adopted has profound disabilities and so much effort and medical intervention and research has gone also into giving him a worthwhile life.

There has been no negative impact on this couple or this family as a result of these two adopted handicapped children. Theri parents have a warm and close marriage. Their children from the first welcomed these little boys as their brothers. My sister is a practical woman, a kind of earth mother, with a good sense of humour and good intelligence. Her husband is a fine man. Issues in the family were always discussed and there is a strong unity in this family. Family faith is strong, and the family has often gone to Mass on weekdays as well as Sundays. It is a happy, creative family.

I wanted to tell you this story because I believe it is a very wholesome family. The mother has a major illness but she is one of the healthiest person I know, because her spirit is whole, and to give and share with every one of her family is a joy to her. Her kindness and wisdom has brought many troubled people to her in their search for help and support.

Perhaps the fact that this family chose to adopt handicapped children as their own rather than giving birth to them, and the freedom of choice involved, may have made the consequences be felt as a smooth passage instead of a traumatic one. This isn’t to say that if either of the boys has medical problems the emotional pain of the parents is any less, and certainly these two boys are as deeply loved as the other five natural children. I don’t know if you’ve come across such an instance. I’m not sure I could ever do what she and her husband have done. I’m a much lesser person


#3

May I copy this and share it with the people in my ministry?

Thiis is exactly what is called a healthy spirituality for families living with disabilities. Whether your sister and brother-in-law are aware of it or not, what has happened is the work of Grace. The Lord God has given them a means to ehance their journey to him. These children and your sister’s own disability is the means. He has invited them to follow him as he walked through the towns of Judea saying, “Take up your bed and walk” and they have responded.

Like Jesus, they have not abandoned the mission that the Father gave them as a couple and as a family, but they have welcomed the opportunity to walk in Jesus’ footstes. As Jesus told John the Baptist’s messenger, “The blind see and the deaf hear.”

Their call is to bear witness to Christ the Divine healer so that all men may know that Christ can also forgive sins and save.

Fraternally,

JR :slight_smile:


#4

Be physically disabled and homebound has had a profound impact on my spirituality.

I have found that my reliance on God has grown significantly, trusting in him that my wife & I will make it and that God can use any circumstance that we let Him for the betterment of the people involved.

My life is deeper spiritually now that I am not chasing employment (though if I found something that I could do that would make an impact I would) and can focus more on my time on growing in the Lord.

Our apartment is like a shrine, focusing our attention on God, and EWTN plays a big role in what we listen to and watch.

I work on genealogy on my computer for a few hours each day, listening to EWTN radio via the internet. This includes my daily mass. (Thank God for EWTN)

As a Franciscan, simplicity plays a big role in my life, and being homebound and of limited resources let me focus my effort and finances on those things that we need while cutting out (mostly by lack of choice) those things that most Americans fill their lives with.


#5

Bro. Thomas,

Thanks for sharing your experience. Like our holy father before us, you have found your Perfect Joy. Our holy father Francis was visually impaired and by the end of his life, he was physically challenged as well. And yet, he was able to write the Canticle of Brother Sun and praise God for the perfection of creation, even when his own body was no longer perfect.

Your disability had helped you see another kind of perfect. The perfection of creation has less to do with physical attributes and physical abilities and much more to do with function.

The sun, the moon, water, air and fire are perfect because they fulfill the function that the Father intended for them. You and many other people with disabilities can also be perfect, when you fulfill the function that the Father intended for you.

You seem to be doing that. You are recovering Holy Poverty, detachment from the world, attachment to Divine Providence, and you sound at peace. One who is at peace becomes an Instrument of Peace.

You say that you do not get out much. Remember our holy father’s rule for hermitages?

Those who because of a disability are homebound can serve the will of the Father and the needs of the Church through a life of prayer united to the Church and hidden within the folds of her mystical robe. The Liturgy of the Hours, silent prayer, spiritual reading, scripture, the rosary etc. All of these things unite us to Christ’s body. When we are united to his Body, even if we lie hidden in the folds of its robes, we are not alone and we have nothing to fear.

You Brother are a witness to this great spiritual truth. There is nothing to fear.

Fraternally in St. Francis,

Br. JR :slight_smile:


#6

This is such a beautiful thread…I know many will be blessed by it

I see people who come to mass walking slowly on crutches or with canes and I think to myself, they , in their own way, are making the way of the cross, as they struggle to reach the inside of the building

We have a barrier free entrance to our church, but barrier free doesn’t mean it is easy for them…In fact ,it is a very long walk for a disabled person…But they do it, and I have never seen them complain or feel sorry for themselves…


#7

One of our friars has cerebral palsy. He walks with canes. When he presides at mass it is wonderful to see him hobble along to get from the back door to the altar. This belongs in this thread and you’ll see in a moment.

Our friary is governed by a lay brother. He appoints the pastor. He appointed J. to be the pastor. When the appointment came out there were letters and calls from lay people complaining because they were given a “handicapped” pastor.

The Franciscans, both Secular and Friars, rallied behind the appointment. It required a lot of education. The laity can be demanding at times and even unreasonable, not that others cannot. :eek:

We quickly realized that we needed a spirituality on disabilities. We began to observe and found that many lay people are not very tolerant of people with disabilities at mass. They claim that people with Down and autism make noises and distract from Christ in the Blessed Sacrament. They complain that a celebrant on canes cannot stand straight, he cannot kneel, genuflect or bow. Therefore, he can’t follow all the rubrics of the liturgy. He can’t distribute communion to those who want to kneel, because if he bends over he may fall. He can’t always distribute communion on the tongue to those who stand, because he can’t always stand up straight enough to reach. He is usually limited to distributing communion in the hand. To some people this is unacceptable.

Some complain that a priest, lector or acolyte in a wheelchair, crutches or with canes is a distraction or he can’t celebrate the Extraordinary Form of the mass. Actually this is not true. He can celebrate it, with adaptations, such as no kneeling for the celebrant and no genuflecting and the altar has to be accesible on the floor not three steps up or he may have an accident.

Sometimes we have to recall that Christ calls us to pray and to worship. He calls us to do so in a family. Not all members of a familly have the same abilities. Not all members of a family process information the same way or move the same way. Every member of the family gets old. Sometimes with age come disabilities that were not present at birth or in childhood.

In a healthy spiritual life one has to be open to the operation of the Holy Spirit within each of us and within the Church. Let us remember when John Paul II became disabled. He could not walk. Later he could not speak. But his presence communicated and radiated joy and love of God and God’s people.

Mother Angelica has suffered from disabilties for many years and she is one of the most influential Catholics in the Church.

When we go to mass the Lord invites us to worship him in spirit and truth. The more rigid that we become about absolute silence, rubrics and distractions, the more likely we are to be distracted by the presence of someone with different abilities. In reality, it is we who are keeping ourselves from inmersing our mind and soul into the present moment at the Eucharist, because we are counting every sound and every distraction from the mass.

I’ve always though it was funny when my mother would tell me to count sheep in order to sleep. I would begin to fantasize about being a farmer or a shepherd. That got me more excited and it took me longer to sleep. Too much focus on the details is just as bad as not enough.

The person with ADHD who is neurologically unable to sit without moving around in his sit, swinging his feet, toying with something is Christ. The severely autistic person who hums to sooth himself is also Christ. The person with Down who giggles, he too is Christ.

As Mother Teresa said, “Christ comes to us in the distressing disguise of the poor.” The person with disabilities may be part of the poor, if he or she is not wanted or welcome among us, because he distracts us from the rubrics or he can’t follow all of them.

When the disciples were hungry, Jesus let them eat. The Jewish leaders were scandalized because they picked fruit on the Sabbath. Christ reminds us, “The Sabbath is made for man, not man for the Sabbath.” The rubrics were made for us. We were not created for the rubrics. We were created to love and serve God.

When we attend the Eucharist, Christ is physically present on the altar, but he is also present in the person with different abilities.

I believe that we should see these individuals as a ray of hope. God has a place for each of us. “In my Father’s house there are may rooms [some are wheel chair accessible].”

Fraternally,

JR :slight_smile:


#8

Dear JR… I can’t begin to express my gratitude to God… for this thread. It is an answer to a prayer, I recently offered to Him. A prayer for greater “understanding” of those who live with disability AND their families/caregivers. I even attempted to raise awareness (rather clumsily, I fear) in the Liturgy forum. Here is the link, if you’re interested.

forums.catholic.com/showthread.php?t=297067

I am sole caregiver to my elderly mother… who suffers from Alzheimer’s Disease, crippling Arthritis and a myriad of other “lesser” health issues. She requires constant attention, the use of a gate belt and a walker/wheelchair at all times. It became necessary for me to quit my job in February ‘08, to become my mothers full time caregiver. The cost of in-home caregiving was outrageous. Due to the Alzheimer’s, she has many behavioral issues. These have caused the most distress and difficulty. Because they are the issues which are least understood by the people we come in contact with. Even… at our own parish (detailed in the link, above).

By and large, we have had good experiences. But as my mother ages and her dementia worsens… I’ve begun to have serious difficulty in getting her to Sunday Mass. Her behavioral issues consist mostly of agitation in large crowds. We sit in the back row, with the elderly and handicapped and it has often been extremely difficult for me to explain to “late comers”… why they can’t climb over her lap, getting into the pew. A few times, she has suffered public “outbursts” due to these situations. I am not able to understand why people can’t seem to rationalize that they should NOT impede the elderly/disabled in this way. My mother is also visibly handicapped. She wears a brace on one leg. And yet… they continue to flow over her lap… each Sunday… leaving me to deal with her “outbursts”. I can’t tell you how many times we’ve nearly left Sunday Mass because of this. My poor mother suffers, tremendously.

More than once, I have made suggestions to our parish office/ministers about the need for more handicapped parking, seating, facilities and possibly a support/prayer group for caregivers and families of those with disabilities. But so far, I’ve noticed nothing being done… aside from the usual few handicapped parking spaces.

All of this has greatly impacted my spirituality. I haven’t had a “day off” in nearly 6 years. And I’m exhausted. I do try to maintain a prayer life. But lately, it’s been getting more difficult to keep up with it. It’s hard to pray, when you’re tired and worried.

I wish I could give a more positive accounting of our situation. But this is the gist of it.

In some ways, we’ve benefited. The Good Lord has opened up many opportunities for my mother and I, to become more active in our parish. In addition to Sunday Mass… we also attend two daily Masses and a once a month “Senior Social”… sponsored by the Knights of Columbus. So, we have been drawn closer to God. I have come to accept that caring for my mother is His Holy Will. And that she is also a teacher, of sorts. Because she is helping me to learn to “die to myself”. I have also come to believe, that I am helping her to carry her cross. I am her “Simon of Cyrene”. She often tells me “You’re my Guardian Angel”… to which I usually laugh, and say… “No… I’m only his assistant, Mama”.

So JR… I thank you for posting this. And for reminding ALL of us, as good St. Francis did… that the disabled… the elderly… and the infirmed are among God’s most PRECIOUS of souls. All of us, should greatly revere and respect them, and their needs. Because they are joined so closely to Jesus Crucified. Loving and caring for them… is akin to wiping the blood streaked brow of our Suffering Savior.

They are “teachers” for ALL of us. God bless.


#9

A lot of dealing with disabilities is how we handle suffering.

Read Suffering in Holiness.


#10

Thank you so much. The blessings of this thread have already begun!

:slight_smile:


#11

In reference to our dear Holy Father, some insisted that his obvious disablilities should lead to his “retirement.” What a tragic and demeaning notion. The beauty of his example as he lived with Parkinson’s was an incomparable model of goodness. Pope John Paul II came to us a a Pope who was wonderfully active and athletic. As an outdoorsman, hiker and skier, those who were blest to see him and admire him in those younger years, could only be deeply edified by his manner in accepting disability.


#12

Amen to that.

Now, MV, having read your post earlier in the week regarding your mother’s special needs, I almost replied at that time with an example that almost sounds simplistic. Here it is.

My own parish has the opposite arrangement for the disabled and their caregivers at every Mass. IOW, they are entitled to use of the FRONT pews rather than the last pews. This insures a number of things. Everyone knows where they are - meaning nobody tries to crowd into those spaces. The disabled who are bothered by crowds don’t see the crowds. The crowd is behind them rather than in front of them. If a need for extra assistance becomes evident, anyone in the parish is free to offer that in the most gracious of ways. (No questions about “what is that disturbance behind me?”) This has been the practice at my parish for many years. Access from the side doors near the altar is easy and near. Hope your parish will re-think its plan.


#13

Br. Thomas,

This was a wonderful site. I had never seen it before. I will pass it on to the people whom I serve in our ministry. It will do a great deal of good. Do you know if they have a Spanish translation? We have families who speak better Spanish than English. I’d like to have it in both languages if I can.

Thanks,

Br. JR, OSF


#14

This is an excellent model, especially where safety is concerned. God forbid you had to evacuate the building in an emergency. Everyone heads for the back, because that’s where the doors usually are located. :eek:

Our parishioners with disabilities and health impairments sit in the front row as well. So do our senior citizens.

JR :slight_smile:


#15

In addition, there is something very profound about giving “the place of honor” to them.


#16

This is one of my writings. No one have ever translated it to any other language as far as I know. If you have someone who wants to translate it, go ahead. - Thomas


#17

Hi Catharina. Thank you for your kind response to my entry in JR’s thread. I really appreciate that you took the time to try to help me and my mom. And it IS a good idea.

However, there are a couple things to keep in mind. I believe the reason our handicapped section is in back of the church… is simply because many of our elderly and handicapped are incapable of walking down to the front. Our church is built in an “ampitheatre” style. The center aisle slopes downward (rather sharply). Another reason, I believe… if an usher should be needed… it would be difficult if the disabled were in front… because the ushers stand in the back of the church during Mass.

In my mothers case… we had to discontinue sitting in the front because of her occasional outbursts… disrupting the Mass. On one occasion, this happened near the Consecration. Our Pastor made no secret of the fact that he had noticed it.

These are the things that are so difficult for families of people with disabilities… which JR alluded to in the original post. And many people don’t understand… because they aren’t going through it.

I wish that I could say, truthfully, that my experiences with my mother have helped me to grow in my faith. In some ways, they have; in other ways, though… I do seek the support and understanding of my parish family. And the prayers of everyone on CAF would also be appreciated. There is a great deal of mental anguish involved, in being a caregiver.

Unfortunately… we’re not all cut out to be a St. Francis of Assisi… or a Mother Teresa (I’m certainly not :blush:). And so… it’s more difficult for some, than others.

Thanks for listening. God bless.


#18

Since this is spirituality thread, let’s speak about the Marie Veronicas of this world. It is no mystery that many people live with disabilities in their families, even if they are not disabled themselves. Let’s speak about the spirituality of those who live in a home where there is a disability of some kind.

Before we do, let’s correct some of our terminology. The word handicapped can have a very pejorative meaning and we must be very careful how we use it. In today’s world of highly educated people, many know where the word originated. It was an old English term for people with disabilities who were unable to hold a job and had to resort to begging. They would sit on the corners of London’s streets with a “cap in hand”. The lower English classes, who did not speak the King’s English well, called them “Hand in Cap.” When, said quickly it sounded like handicap. It often evokes an image of one who is helpless, that’s why it is often avoided.

Those who provide care for persons who have different abilities or even limited abilities in certain functions are called to a life of holiness as is every Christian. What we have failed to tell them is the Good News.

I’ll speak from my personal experience. Before becoming a Brother, I was married. We had three wonderful children. My wife, oldest son, and my father were killed in a car accident in 1993. I was left a widower with two surviving children, a little girl age nine and a little boy age four. My little boy has autism. He does not have mental retardation. He is a high functioning autistic. He has problems with communication, understanding what people say or expressing complicated ideas, especially feelings. He has feelings, but he has a very difficult time putting them into words. When he was younger he had frequent temper tantrums, because he did not know how to communicate frustration, anger, fear, depression, anxiety, confusion, and all those strong emotions that require more abstract language, because you cannot express them in black and white. He had problems in school when the material was too abstract and no one helped him break it down into its component parts so that he could understand it in more concrete terms. Therefore, he was always at the end of his class even though he was very intelligent.

The years have passed and today my daughter is 24, has a Master’s of Science in Brain Education, and wants to dedicate her life creating educational materials for people like her brother. My son is 19 and a sophomore in college where he studies art. That’s his way of communicating with the world and understanding the world. He thinks in pictures and speaks through his drawings more than with words, though he does use words. His affect is flat and he never expresses emotions in words. He is so black and white that he can only express joy and anger. He laughs or he grunts. All other emotions come through his art.

This takes me back to the Marie Veronicas of the world. Such persons have a vocation that is very different, but just as valid as the vocation to marriage, priesthood, religious life, or the single life. They are often left in the dark about it.

Each of us is called to follow Christ and to imitate him, with an emphasis on one of his attributes. The person who shares his life with another who has disabilities is often in the place of the mediator between his loved one and the world, just as Christ is the mediator between the Father and humanity.

In my own life I have found myself mediating for my son, helping him understand what he needs to understand and learn what he needs to learn. I have found myself helping others understand people like him. I have found myself carrying messages between my son and the world around him and helping him to learn how to deliver his own messages. I am reminded of St. Francis who said that our way of life is to live the Gospel of Our Lord Jesus Christ, without gloss. This meant, without watering it down.

If we take the Gospel at face value, what did Christ come to do? He came to mediate between God and man. He delivers the Father’s message to humanity and offers humanity’s sacrifice to the Father. This is Christ’s priesthood. Yet, there are so many parallels between Christ’s priesthood and that of a person who cares for another with special needs. A great deal of time and energy goes into mediating between the beloved and the world. And with this ministry, there is also great suffering and great joy. Christ’s priestly ministry was also filled with great suffering and joy. There was the cross and the resurrection.

In many respects the ministry of the Marie Veronicas of this world is a priestly ministry. It highlights the priesthood of God’s people. Christ calls us to be mediators between God and each other. God graces some people to exemplify this call by making them caregivers. If we accept our situation as a call from Christ, to model for others the priesthood of God’s people, many souls will be saved by the grace that is poured down upon us. Because when one part of the Body is blessed by grace, the entire Body is blessed.

The vocation of the caregiver is to remind the faithful that we are mediators; therefore, a priestly people.

Fraternally,

JR :slight_smile:


#19

Wonderful thread. I’ll add this.

I was the sole caregiver in my family for my father, this despite the fact that I was one of eight siblings; it simply worked out that way. One of the most moving experiences that occurred was when our dear pastor came to bring the Holy Eucharist to my father. This dear priest paused for a moment after giving Holy Communion to my dad and asked me “Would you like to receive too?” Oh yes I would and oh yes, I did. It would never have occurred to me to request it! (This dear priest eventually became a bishop and handled the transition following the death of Cardinal Bernardin.) His kindness to my father and to me still stands as a beacon of light in a very dark night. I was a very young mother at the time, separated from my husband and in the midst of my own catastrophic medical problems. My father, dying of congestive heart failure, was the age I am now when he died after some years of disability.

Later as the years passed, my dear mother took ill too; by then, my brothers had learned to give care too. What a blessing! Their involvement might have flowed from a conversation I had with one of my brothers. When I said more visits and care from my brothers would help our mother, he answered with “Yes - but you do it so well.” My (inspired?) response to him: “Maybe so, but I wasn’t born with this ability!” He was the one who stepped front and center during our mother’s last illness and during another brother’s final illness (less than a year ago). Now this “little brother” is facing surgery for cancer. I ask your prayers for him. His name is Daniel. PLEASE.


#20

Prayers for Daniel, MV and all caregivers promised:gopray: .


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