AUDIO
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Archbishop Peter Jensen's Christmas Message 2011 on the centrality of Jesus to human history
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How friendly and accessible are our churches to children who have a disability? I think it's something we really need to keep an eye on.
Firstly, our buildings should reflect our consideration of all children's needs not just those who are able bodied. I remember when the church we attended put in their first ramp, up to the front door. For years before that, one family of a girl with cerebral palsy had struggled up the steps with her wheelchair. Hopefully most churches are up to speed on physical accessibility for all people, including access to toilets. Is yours?
However, disabilities are not always visible or physical.
Have we asked the parents of children with disabilities, what their needs are? Children with developmental delays struggle to belong everywhere in society. Parents of these children know they need to socialize just as every child does, but the opportunities are limited. In church, we need to be aware that if children misbehave, it is not always because their parents are 'slack', but the children may have a condition that affects their capacity to socialize appropriately with other children.
How easy it is to judge! Disapproving stares and looks of agitation are not very encouraging and many parents of children with a disability simply give up going to church. Then it's not just the parents who miss out on teaching and fellowship, but also the children.
All people, adults and children need the opportunity to be part of a Christian community so they can catch a glimpse of the love of God. The Sisters of Mother Theresa in Kolkata, India refer to the disabled children they care for as 'The wealth of the church'.
"In Asha Daan there are about a hundred children, boys and girls, 83 of which are physically or mentally handicapped," a nun explained. "They range from 3 to 15 years of age, but they seem much younger. In some cases mental disability reaches 90 per cent, but each one of them is a treasure, a gift and a blessing."
"Each life ought to be lived," Sr M. Infanta said, even if it does not meet utilitarian criteria or is not "productive" according to today's models.
"These children have been created to love and be loved. They are a unique source of blessing for us, society and the whole world," she said. (Asia News, Nirmala Carvalho, 2/11/2009)
Life for the parents of some severely disabled children is an ongoing and relentless task twenty-four-seven, caring for their children.
I heard some sad stories on 702 (ABC local radio) last week of parents who had deliberately abandoned their children in hospital, so that they would be taken into DoCS care and much needed respite care services supplied.
I know that we Christians need to care and to show the love of God. How can we lift our game at the local church level so that we can show we care for children with disabilities? What does your church do to be friendly and accessible to all children?
1. Reaching to your foundations
’Table Talk’, the Luke14 DVD, is shown in church. Awareness of the issues provokes prayer and discussion. CBM is contacted for resourcing and ongoing support.
2. Reaching in to your midst
Small groups work through a multi-media bible study series, ’Church Bar None’. The church runs a Disability Awareness Event (Luke14 Sunday), and addresses the existing access needs of church members.
3. Reaching out to your neighbours
A Community Audit is conducted and an Area of Focus identified. Links with local disability agencies are made. The outreach of the church becomes accessible to people with a disability.
4. Extending your reach
The church supports the wider development of disability ministry by supporting and mentoring other churches. Stories are shared and capacity for ministry and outreach grows.
You know the biggest sorrow I carry over Ella and church is a little bit the same...people are friendly and say hello but she really lacks any meaningful relationship with any child there (and it is a BIG church, which in some ways may be less than helpful). I am also ever hopeful that one young person (even a young adult) may befriend my Ella and just go the extra mile it takes to make her feel included-not just one week but every week. Maybe invite her somewhere outside church. But then that takes a great deal of effort and it is a social sacrifice! Because the other kids don't get the responses they are expecting/used to which build friendships often I find they just "turn off" and Ella just "floats" always feeling on the outer which really saddens me. She doesn't have the ability/social skills/language to "keep up" with the crowd, but I know how much she does have to offer and to teach us. I also know how much she longs to have a real friend. There is only so many times I can thank a child for letting her "hang around" for five minutes!! In this secular world we live in disability is not attractive-you don't gain any kudos, power, wealth, or status by investing in someone like Ella. That is why I feel SO passionately if there is one place in the world that people with disabilities should be able to go and be treasured is church! The only tip I can offer is to try and educate people and remove the barriers...Jesus loves us ALL as we are, imperfect!
I actually enjoy the fact that my son will be the loudest person in the church - it helps other parents to relax and not be concerned about the noise that their children are making.
How do we continue to act as a community to not only make church more accessible but to also consider how we can further support those parents who have the immense privilege of caring for a child (or children) with a disability?
1. Has his mother ever been invited to attend church?
2. It seems a shame that she feels she needs to come to the dinner and feed him (just because it is messy?) Has anyone ever asked if they could take over this job for her? Her whole life would be taken up with caring for this young man, how wonderful if church could provide even ONE meal respite for her!
3. Would it be beneficial to have a team of volunteer friends for this guy who could perhaps all meet together and discuss how they could support him and his family? Even be rostered on as a "buddy" system and as they find they spend more one-on-one time with him then their confidence and communication would grow.
4. Does he attend any youth group/bible study? Could there be ways in which he could be welcomed into a small group so he could have a much better chance at communicating and building meaningful relationships?
5. Perhaps a group of guys could offer to take him on a couple of outings a month (even in his own home) to give him a sense of having some friends? I think people forget that people with disabilities need friends just like we all do!
6. Could you approach his mother and ask if the church could provide some respite for her?
Anyway,
hope this helps,
Madeleine
CBM developed Luke14 because people and families living with disability need the hope of the gospel and the support of the local church like everyone else, but by and large they are not getting it. Yes, there are the two or three people with disabilities already in our churches (though most likely on the margins of church life, as Madeleine, Peter and Michael have pointed out)... but there’s also the 10% of Sydney that we largely don’t know– the 10,000 living in the city of Ryde for example, or the 3,500 living in Strathfield. The group that Jesus talks about when he says in Luke 14; “When you give a banquet, invite...â€
What is stopping us from following Jesus in this area? Fear, ignorance, a sense of inadequacy, a view that this is a ‘specialists only’ area, a tendency to focus on the disability rather than the person, a reluctance to do ’charity work’ when it’s actually about friendship, and a mistaken idea that this has nothing to do with us.
Luke14 is a four-step process that starts with raising awareness, moves to education using the insights of the experts - people living with disability, then equips the church to engage in disability-inclusive practice within the church, and disability inclusive outreach.
As the parents you would explain and equip these young adults as to what type of care your child needs, and a wonderful relationship can develop from this. Such involvement starts with a church's willingness to meet the needs of one, but in many churches (though not Australian ones yet unfortunately), becomes an intentional ministry that outreaches to families living with disability in the community who have no current church connection, but an enormous need for friendship, support and hope.
Let's be the church - a place of hope and friendship that's done this thoughtful preparation, so children and families living with disability can participate and really belong.
God has blessed my husband and I with 3 wonderful children. Our eldest, Anna, came “specially wrapped†(to quote Chuck Swindoll).
God has also blessed and protected our 26 year marriage, even though I only acknowledged his hand in my life 4 years ago.
You see I am one of the minority of carers of loved ones living with disabilities whose family has not left the scene for whatever reason.
I am also one of an even smaller minority of carers who is lovingly supported by a church family (in my case Wild Street Church, Maroubra).
We are all created in God’s image, he does not make mistakes and he has a plan marked out for each of us.
God’s purpose for his children is to reveal his glory through the impact we can have on others.
So I am blessed because God can use Anna and I, through our circumstances, to have an impact on the lives of others.
My prayer is that many more church communities will follow our Lord’s teaching in Luke 14:12-14, and will thereby be blessed but will also have the opportunity of having their lives here on earth influenced by children of God, like my Anna.
Where my family currently is, there is a large lack of young adults (or anyone else for that matter) who is able/willing to commit to teaching Sunday School. In addition to this, since I am in an occupational ministry, I can only encourage what needs to happen within the congregations that we worship within.
I believe that the big thing out of all of this is that our churches never forget that the Gospel is for all and that we need to ensure that we are not doing anything which precludes some people within society from coming to church - without compromising on the Gospel.
Children with disabilities creates a difficulty. And that is where I agree with many above that we need to be the church and continue to look outward to ensure that we are not falling into the same trap as many of those that Jesus challenged during his ministry. How shocked the people were that he was willing to go the extra mile for those that society rejected... Yet how complacent we can easily become when we focus inwardly.
Mind you, on another note, it takes a long time for some teachers to learn to deal with certain disabilities (ie - Autism, ADHD, ADD, Aspergers etc) so we should not necessarily expect our Sunday School teachers to necessarily be able to do this. My question to this point is to ask how then we are encouraging those parents of such children if they are unable to sit under good teaching each week. Free tapes of the sermons? Other options?
"Children with disabilities create a difficulty... How then are we encouraging those parents of such children if they are unable to sit under good teaching each week. Free tapes of the sermons? Other options?"
My kids create difficulties at church. They're not angels out at Kids Church anyway. I'm often apologetic on their behalf to our few long-suffering teachers. But no-one says or implies that I should stay home and listen to sermons on tape because of this. Isn't there something wrong when up to this arbitrary point we call 'disability', every child and family that wants to participate in church with us is welcome, and we'll seek to accommodate them, but beyond that point they're really not and we won't? Underneath I think we're making a deeply hurtful, but false statement - that when it comes to disability there are people we don't need.
How is this for you? Often on top of the 'no quarter' that comes with disability, the family has to do all the asking all the time for anything to change or be given. Could Luke14 be a way to encourage your church to be more proactive and caring and involved?
When my husband and I were in Sydney we got heaps of benefit from attending Youth Works Children's Ministry Training. Luke14 has developed similar workshops to equip Sunday School teachers to create inclusive classes and curriculum. Being intentional to do better seems a better way to go, because - 1 Cor. 12:22 - we really do need each other.
I need to be clearer in what I am saying.
Children with disabilities may cause special difficulties. Just as a simple addition of a ramp at church will overcome some difficulties, there are many other things that can be done to overcome the vast variety of difficulties that may stop some coming to church.
Having exhausted many options, I am suggesting that while no other options are presently available, that we as a community seek to assist people to at least have regular access to some good teaching (hence the comment about the taped sermons). While this is not the ideal, I think that if we are putting the effort in on this side it is a great start while we try and overcome the difficulties...
Yours in Christ,
Mark
The problem in your statement is the comment 'while no other options are available'. Someone to look after an autistic child during a church service is not the biggest ask in the world. Yes, it requires someone to get close enough to to the family to learn what is needed. It requires relationship.
Yet if no-one is prepared to do this I wonder at the value of providing taped sermons. Seems to me the teaching is not good enough.
Personal - 'people with disabilities, rather than 'the disabled';
Positive - 'has a disability' rather than 'afflicted with a disability' and ‘has a learning disability’ rather than ‘is mentally retarded’
Precise - 'wheelchair user' rather than 'wheelchair bound'
I meta member of one of our 'mega' churches the other day. He has a young child with multiple disabilities and used the word 'smashed' to describe his life. His troubled question is, “How can we possibly bring the church to care about the impact of disability?†His memory of a prior ‘happy-go-lucky life’ is very fresh. What it's like to have no sense of connection with that 'foreign' world. What it feels like to have an impromptu coffee with his wife... To run down the street for some milk... To plan his career, and what to do with his spare time and cash... Now he and his wife look at each other and ask themselves, "Can we do this?" YET when he had the chance to speak about this to his church, he emphasized the deepening of his faith and the treasure of his child, and the congregation, schooled to hear ‘before-and-after’ testimonies, assumed this was one of those and that he isn't looking for help! Of course, he didn’t ask for help. A survey in the States on the hardest thing about living with disability turned up ‘Asking for help’ as the top difficulty.
Thank you for being honest.
Are there thoughts you could share to help some of us insensitive people such as myself to better understand how to personally support and encourage parents as our brothers and sisters in Christ?
Di
No help and isolation would be very terrible things to feel in such circumstances and as family in Christ I see there is need for us to provide loving friendship and care.
You have reminded us of the importance of genuine love amongst us.
Di
The Kingsdene school community is like an extended family where all the disabled children, their non-disabled siblings, their parents, aunties, uncles and grandparents feel completely included. We never are made to feel embarrassed by our disabled children.
Sadly Kingsdene may soon go the way of many other specialty special schools and close next year. I strongly suggest that if the Anglican Church rally wants to learn how to care and show love to the disabled in it's church community that they better learn all they can from Kingsdene before it's gone.
I have a son who is severely intellectually disabled and has had the most amazing education at Anglicare's Kingsdene Special School. For my son the most precious result of the extended learning program at Kingsdene is the real, equal and unforced friendships he has made with his peers. For people with intellectual disability loneliness is the saddest part of disability. There are those that are totally unaware that people with intellectual disability can feel lonely. For all of us one of the driving aspects of society is the feeling of belonging and acceptance.
Nothing happens unless first we dream and I dream of a world where people with disability are embraces as part of our human diversity and that we realise that it is people with disabilities who allow us the opportunity to be truly human. If we are looking for the manifestation of Jesus we will find him walking with the children at Kingsdene Special School and with people with disabilities everywhere.
But there are simpler things too- accessible toilets. To go to the toilets at St Andrews Cathedral you have to go up and down rather narrow stairs, and there is no toilet for disabled people or a baby change room. I know the diocese might be a bit strapped for cash but that is one big thing it could do. And it should do.
One great aid for parents with disabled children is respite. This is where church families can offer so much and where there is very little available. My daughter (multiple disabilities -epilepsy, developmental delay, incontinent, visual impairment, has a vocabulary of about 10 words cannot feed or dress herself, walks about 1/2 mile before tiring) is 15. During that time I have had 4 nights away from home or family that were not work related
Its not surprising that people just give up and 'abandon' their children.
Its not surprising that 70 % of marriages where there is a child with disabilites ends in divorce.
One book I have found very helpful is "I'll love you forever" by N Wright, a US baptist pastor whose disabled child died when he was in his early 20s.
"As a Special School, the Government currently provides the maximum rate of recurrent Recurrent Grants funding to Kingsdene". (They would be referring to the maximum amount under the legislation = Socioeconomic Status / 70% Average Government School Recurrent Costs amount funding model which I think was brought in around 2003.) "There is, however, no additional Commonwealth funding available for Kingsdene.
I found a letter from a grandfather to the Assistant Commissioner into the Disability Discrimination Act sent back in April 2003. It may give readers some insight into the problem and the wall of opposition we parents face. The letter is at www.pc.gov.au/__data/assets/file/0011/41132/sub046.rtf
I doubt if anything has improved since that letter was written. Independent Special Schools are disappearing to the detriment of education for the severely/profoundly disabled students.
The lack of such residential support -respite leads to what the government calls "Blocked beds" where a child is admitted for short term respite and the parents then dont take him or her home. Its a horrid position to be in. There was one child at Sophies (my daughter) school whose parents couldnt cope any more. Not because they did not love him but because they just couldnt keep on looking after him. They didnt take him home after a short term stay.
Its only when that happens-when the government sees just how much money it may need to provide -that it offers you any realistic support. Sadly then its too late
It was too late for this family, and as it turned out it was too late in another sense. Brendon died in early July, his mother at his hospital bedside (Sophie was in hospital then too)
Kingsdene is the only school that also offers respite. Its not much use to us outside Sydney but its a great resource for those in Sydney.
We have a 'Save Kingsdene' Facebook Group and are investigating all suggestions of other ways to create public awareness. If you have any suggestions they would be appreciated. Regarding your earlier comment I would add that there were two similar independent special school + residential skills programs in Sydney. These were Inala and Mater Dei. I believe both ceased these services around 2004 due to funding issues. I have heard that there have been several plans for other similar schools in other regions of NSW that have been abandoned due to the same funding issues.
Allan,
We know the $ figure needed to save Kingsdene but I'm not brave enough to post it here.
These links give some history of when that funding that was reinstated by Brenden Nelson:
link 1
link 2
link 3
link 4