Towards a Disabled Friendly Church

Growing up in the church, the importance of Christian community was impressed on me from an early age. I was taught that Christians were like coals heaped on a fire: so long as we stayed together our flame would burn bright but separate the coals and the flames would go out.

My active participation in church began as a chorister at the age of six. At ten I was asked to do bible readings and hand round the collection plate. By fourteen, I was acting in dramas and assisting with Girls’ Brigade. I preached my first sermon at sixteen, served communion at seventeen and was staffing holiday clubs and summer camps by eighteen. Throughout university I played in the music group, served refreshments, taught Sunday school and helped with numerous outreach events. Then chronic illness struck and I became housebound at the age of twenty-two.

The church I attended did fantastic work with students, pensioners, prisoners, overseas missions and local schools but as a young disabled person I fell through the cracks. This isn’t meant as an indictment of that particular congregation; I know of dozens of housebound Christians of every denomination who’ve experienced the same.

At first I had occasional visitors who told me I was still remembered in prayer but as weeks stretched into months those contacts dried up. Despite all I’d been taught about the importance of church, I found myself entirely alone.

Too ill to actively pursue relationships and too sick even to read my bible, my only Christian contact for two years came from hospital chaplains during times of medical crisis. After a lifetime of Christian fellowship, it was difficult to find my support network gone; we are designed to exist in community and life and faith become much harder when we are forced to go it alone.

I struggled to cling to the last vestiges of my faith when my illness had taken all else of value from me. I was bitter, and angry that after all my years of service the church wasn’t there for me when I needed it most. I felt like I had been chewed up only for church to spit me out when I had nothing left to give.

Eventually, a family member took action and emailed several nearby churches on my behalf. Only one church replied, offering to bring home communion once a month. While I was grateful for this small lifeline, it was a far cry from the kind of fellowship that I was used to. I missed the example of older, wiser Christians and the opportunity to share my own knowledge and experience in return. I missed mutual hospitality and the chance to make a positive contribution to the lives of others.

Feelings of worthlessness at my inability to work were compounded by the realisation that even the church saw me as a tragic person to be ministered to rather than having something valuable to give. Other Christians mistook my frustration for guilt and assured me that I wasn’t expected to contribute so long as I was ill. This would be fine if my illness was short-term but if it is truly better to give than to receive, why should I be denied this blessing just because I am ill?

Most books on disability and church focus only on what can be done to help disabled people rather than consider what they can offer in return. It is assumed that all housebound people must be called to ministries of prayer but is this really the sole calling of disabled Christians or is it simply the most convenient?

Of course prayer should be an important part of the lives of all Christians but this is no truer of disabled Christians that it is of anybody. I greatly admire the tireless intercession of prayer warriors I have known but without a true gift for intercession it is hard to know how to pray for others when you are too sick to follow the news and no longer hear anything of the church and community you are striving to pray for. After years of trying to foster a ministry of intercession, I still have days where I struggle to pray at all. For a long time my sense of failure was overwhelming until it occured to me that if intercession wasn’t my primary gifting before I became housebound, there was no reason to expect it to become so afterwards.

You see the bible teaches that we each have unique gifts and the call to use these gifts is irrevocable (Romans 11:29). My own gifts have always been of a practical nature and that hasn’t changed because I am ill. I am still the same creative, empathetic, deep thinking person I have always been even if I cannot demonstrate these gifts in the same way. I find it hard to accept that God would give me these gifts if he didn’t intend for me to use them.

Many of the things I did for others could still be done from a bed or a chair, but I depend on people letting me know what they need to be done and delivering the necessary materials to me. It has been a long hard road to find new ways of using my gifts through blogging and correspondence. With the support of a church community I might have found this path sooner.

Inclusion of people with disabilities is about far more than just getting them through the doors on a Sunday morning. Changes to the fabric of church buildings won’t transform the attitudes of congregants to seek proper relationships with disabled church members. No amount of wheelchair ramps, hearing loops and hi-tech audio-visual systems will change the fact that I am only one of thousands of Christians too ill to attend formal worship but who need that sense of community as much as (if not more than) anybody.

In recent months the church that brings me communion has started to explore issues of what it means to be a community where people of every background, ability, and circumstance can belong and play a valuable part, not just on Sundays but through the whole of their lives.

I am glad to be included in this conversation, and while I don’t pretend to have any of the answers, isn’t it time we started asking the questions?

Over to you:
Has your own experience of illness left you feeling isolated?
Do you struggle with loss of self-worth or feelings of frustration at not being able to do the things you used to do?
What can your church/other religious community/society as a whole do to integrate the sick, disabled or housebound and value them as unique individuals with a positive contribution to make?

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This entry was posted in Faith, Hidden Disability, Myalgic Encephalomyelitis (ME) and tagged , , , , , , , , , , , , , , , , . Bookmark the permalink.

18 Responses to Towards a Disabled Friendly Church

  1. Sarah's mum says:

    Absolutely!
    We need to stop making assumptions and start asking questions….and listening properly to each other.

  2. MCS Gal says:

    I am fortunate to belong to a church that not only serves me but asks me to serve them. I have had to make an effort. I make sure I am on the email lists so I am aware of needs and I keep in touch with the people who are in charge. I may not be able to physically take a meal to someone, but I can cook one if someone else delivers it. I am able to make phone calls and send letters. I can reach out to the lonely and offer encouragement to the overwhelmed. Heavenly Father knows what I can do so I ask him for opportunities to serve and He provides them.

  3. juliasarahelizabeth says:

    You may be encouraged by restministries.com and their support website restministriessunroom.com. if i mentioned before, i apologize. My memory is terrible these days. It is a Christian organization started by Lisa Copen who has Rheumatoid Arthritis and Fibromyalgia. She too discusses these struggles and gives ideas for ministry. There are books available both by way of devotional, idea books, coping suggestions and much more. I even found out that there is a Christian website for those who are suicidal. All this info is available on the rest ministries webite. The other site is thinkingaboutsuicide.com. i hope this information is a blessing to someone who reads your blog.

  4. I am so moved by this blog, I can’t begin to tell you. You put so well, how I feel and have felt. Most of my friends and family walked away from me when I became ill. I can’t tell you how many times I regretted that I hadn’t established myself with a church, so I would have some kind of support system. You made me understand how mistaken that was. People are the same all over. They just don’t seem to understand chronic illness. It sounds like God is giving you a wonderful opportunity to work with the church you are in contact with on this issue. I do believe that God has a plan for all of us. I believe we just need to stay open and willing for God to lead us down the path. Hang in there. I’ve been sick since 1994. I’ve gone through all kinds of negative emotions and come through the other side. There is a light at the end of the tunnel, and it’s not a train.

  5. juliasarahelizabeth says:

    Reblogged this on Julie's Spoonful of Sugar.

  6. Tiggercat says:

    I have come across your blog via another. My Husband and I have also found that, when it comes to chronic illness, the support of our church seems to be in the way of prayers (for a short period) and 3 visits in 10 months. 2 of those visits were because the visitor wanted something from us, not to see what they could do for us.
    I also work for a church and would like permission to forward this post on to members of our Pastoral Care group. We have a number of members of the Parish with Chronic Illness, some of who cannot get out of home. It might be an interesting challenge for them to consider what you say.
    Thank you for saying it.

  7. Pastor Johnbabu says:

    Dear Christian Friends in Christ.

    Warm and Joyful Greetings to you in the Name of our Savior Jesus Christ.It is blessing to Visit your
    good web site. You are doing such a wonderful work for the Glory of our dear Lord. I am very glad to
    introduce my self to you, I am pastor D.John Babu Chairman and Senior Pastor of Word In Action
    Outreach a Christian non denominational and Non profit Organization in India. Kindly pray for our
    Ministry among the helpless and hopeless people in India..

    We have some disabled helpless brothers and sisters in our Churches with pathetic conditions.If the Lord leads you and if you have opportunity, kindly let me know, we can work together for the Glory of His Holy Name.

    You are welcome to visit our area,Andhra Pradesh,India.

    Thanking you.

    BLESSINGS AND PRAYERS.

    YOURS IN HIS SERVICE.

    PASTOR.D.JOHN BABU.
    CHAIRMAN OF WORD IN ACTIONOUTREACH.

  8. Frances says:

    Hi Sarah!
    Your mum forwarded me the link for this the other day, along with other church ministers who she thought would find it useful. I did reply to her, but unfortunately got distracted before I was able to respond to you as well – apologies. In my churches, we do our best to keep in touch with members of our congregations who have become ill or housebound, but it always upsets me when I learn of a person who is remembered by someone as a member many years ago but of whom I have never heard – sadly, this is usually when they die, and we are asked to conduct the funeral. I am sure that, as well as people with whom we have lost touch, there are others in our parishes who would like some contact with a church but of whom we know nothing. Years ago, the local vicar was often alerted by a doctor or district nurse, but modern rules of confidentiality mean that this doesn’t happen now. I’d be very interested to hear from you, or any of your other followers, of any ideas for actually identifying housebound Christians who would like to receive the church’s ministry – or indeed, as you say, actually be part of it.

    Thank you for all that you are doing in awareness raising – God is definitely using your literary gifts.

    Frances xx

    • To be honest, I have no idea how you would go about reaching housebound people who have already been lost to the church. The most important thing is to continue to include the housebound members you already have and be aware of any members of your congregation (housebound or not) who may be affected by illness and need the support of their church community in the future.

      The responsibility for this belongs to the entire congregation not just the ministers. All too often as non-ordained members when someone becomes sick or bereived we expect the leaders of the church to deal with this single handed and either don’t notice the need or prefer to ignore it assuming someone else will step in to help. I was just as guilty of this before I became sick and I have no idea how to change the attitudes of people in the pews. In my experience people who are sick or in need are not looking for dutiful sick-visitors but genuine friendships and if the church is to be a true community we all need to play a part in this.

      • Frances says:

        Thanks, Sarah! Fortunately, being fairly small churches in small communities a lot of my church families do care for one another, and there are many genuine friendships which are sustained in good times and bad. However, it’s good to be reminded of the importance of genuine friendships, and I’ll use your thoughts in one or two sermons – as I did the one about apples and gifts! xx

  9. cyleste says:

    I’m so very sorry that you went through this and yet the story feels so familiar. I’m no longer a religious sort, but the heartache I went through all those years ago… It felt like over a hundred people simultaneously turned their back on me all at once. It’s not as if I had done all that service *expecting* something in return… but I was pretty shocked to discover how little I actually meant to them when everything was laid bare. Ignorance is bliss, isn’t it? I had been ignorant of their true selves and it was blissful and learning the truth of who they were hurt a lot.

    Luckily I’ve since found people who practice what they preach and live their true selves…at least as close as we can as humans. I mean, we’re all still growing, right? Anyway, I enjoyed your story and hope you find your own ‘happily ever after’. ~Cyleste

  10. I was older than you when I became ill but can relate to the feelings of isolation. I think it’s because we naturally become absorbed in finding our new normal and our friends don’t know what to talk to us about. They see us as ill, not as just another person, and once they express sympathy, they run out of topics. For some, they think it impolite to talk about normal things because they feel bad we can’t (or can’t always) participate. In some ways, I compare it to the isolation of friends who have just started to have babies. The new parents are consumed with baby things while the still childless can’t relate and even sometimes pity the new parents for missing out on the fun stuff.

    I found your blog after you liked my post on Invisible Illnesses. What you write about is almost the opposite of having a chronic illness that isn’t apparent. In that case, the unaware treat us as normal because they’re ignorant to us needing to be handled with care. Sometimes appearing normal is a good thing, though. Your post here indicates you’d like to have a little bit of the normal, right? I think the two situations, while superficially seem polar opposites, they have a lot in common. We all want to be included in a community and we don’t want our illness to define us. We want to contribute; this sense of competency is important to our confidence and contentment. We do, however, need special accommodations. We may not be able to participate in the way we used to but we can definitely be a part of the community.

    Thanks for your thoughtfulness and inspiration – you’ve helped me think differently about illness and community.
    Caryn

    • My illness is also classed as invisible as there are no obvious outward signs that there is anything wrong (in fact according to your blog two of our diagnoses are the same).

      In the early years of my illness I remained in part-time study/work until a severe relapse finally left me housebound so I know what it is like to live in the ‘normal’ world with symptoms that others cannot see (hence the reason I ‘liked’ your post as the experience you described was very similar to my own).

      Even now when people look at me they see someone young and apparently healthy who happens to use a wheelchair and they expect me to be capable of doing all the things an otherwise healthy wheelchair user would be able to do. If I try to explain why it is that I can’t work or participate in social activities people look at me with scepticism – in the hour a month that they might see me I often appear to be perfectly fine. They don’t see the fact that I collapse for hours or days afterwards and need daily care from others to do even the most basic things.

      At every severity of my illness whether my symptoms have been visible or invisible the isolation and lack of understanding from other people have been remarkably similar and the need for community and friendship just the same. Whatever form chronic illness takes there is clearly a long way to go in educating people about how to respond. Thanks for sharing your experience.

  11. Diane Reid says:

    Thank you for visiting my blog and leading me here. This post is timely. I know from my own limitations that it’s terribly hard to stay connected using the systems that are in place. My sister has been basically housebound for years due to severe chemical sensitivity. SHe so misses the fellowship of others. I will send her this post; maybe she will get encouragement from it.

  12. grandmaofthree says:

    I have severe MCS and fibromyalgia and I have estrogen sensitivity with post-menopausal endometriosis–
    Nobody can treat me (the last one especially)–
    I am on a special diet, and I am restricted in where I go. Our church building (and this is the church I was ‘born’ into, not in this town, but this denomination) is toxic; new carpets were put in 4 years ago and still haven’t offgassed enough that I am safe there. I get the typical MCS reactions, but it also feeds my estrogen sensitivity, so going to church is impossible for me, even on days when I’m strong enough.
    My husband LOVES the church and is fully involved. Our remaining children (we are older parents; some kids still at home)–go and participate.
    My congregation has mostly forgotten me. I serve by e-mail; I help with the music, but nobody ever thanks me. A handful of people (about five) have remembered me and sometimes ask about me–and now and again even visit me–
    but I am very isolated.
    We are getting older; my husband has never been abusive with me, but lately he gets grumpy near Sunday–and he gets defensive with me about the things he does at church, sometimes almost mean–
    I help him with his church assignments from here at home, but it almost seems as if he is angry with me for being ill; he’s a simple man, and my illness has been hard on him. He tries to be kind to me, but changes are hard for him.
    I am feeling so very alone. So terribly alone. I have gone so far as to try to visit other churches, but there is no feeling of belonging at all–
    Anyone else been here? Thank you for letting me express this anyway. My husband is willing to pray with me about this, and we are praying for help and guidance. Life just has no joy anymore–
    there are other problems as well, financial, etc.–and a custody battle with a married child (well, not anymore) in which our grandchildren have been basically taken away from us–
    our child has not lost custody, but the other grandparents won’t let the children see us, and we live far away–they won’t let the children leave; they have no legal right, but they are audacious people and don’t care about that–
    Sometimes I feel that God just decided that I couldn’t have any more joy in my life–and, yes, I have been angry with Him. I am always sorry, and I still pray all the time, but I have felt anger–

  13. drgnflie says:

    My church did the same thing, I still have a hard time believing how fast I lost my friends and contact with everyone both from school and from church. For years I was not able to go to church at all, now I can go occasionally if I’m feeling up to it, but its very awkward for me. People change alot in 4 years, all the other kids I knew are grown up, some people moved away, or got married, some even have kids! I don’t really know them anymore, and they don’t know me.
    On top of that is all the stress I have to deal with from people who either A – don’t understand whats wrong with me, or B- think everything is all in my head.

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