Tuesday, January 29, 2013

Churches and disabilities a Discussion Paper - CANDL

I was looking for something else and found this. I think it is accurate and interesting.

A Discussion Paper from Barnardo's CANDL Project

This is one of a series of discussion papers dealing with current and controversial questions for the church in modern society, and primarily distributed with our quarterly newsletter. Our aim in these papers is to provoke debate and action. As such, the views and questions expressed herein are sometimes quite deliberately blunt and to the point, but do not necessarily represent the policy of  Barnardo's.

Disability and the urban church

There is an interesting blog written by an American Christian Jeff McNair about disability and Christianity. He makes the statement that 'disabled people don't go to church'. I mentioned this to a cousin of mine who has ME and she gave it her immediate assent -- 'Yes, you just have to look at who goes!'

This problem that disabled people have with church is reinforced by another American Christian -- Mel Dugosh in a moving paper about his experiences:

"In 1995 I attended a conference sponsored by C.A.M.P., Children's Association for Maximum Potential, and moderated by the editor of Exceptional Parents Magazine. The conference objective was to improve relationships between parents of children with significant disabilities and medical and educational professionals. After ten years of parenting one child, I admit that I had become very cynical that those relationships could do anything but worsen. The workshop was dry and predictable with the professionals extolling their expertise and the parents participating little. Suddenly a male parent stood and said, "Hey, lets talk about what's really bothering me ... we can't even go to church as a family anymore ... our child isn't welcome there. When we find a church that wants all of us ... this is where we are going to go."
The meeting went haywire, with the parents all speaking at once ... out loud and amongst  themselves, each of them sharing a story of exclusion at the hands of a church. I said nothing; this  hardened parent had dissolved in tears, silently grieving the church I had lost. The church that had asked us to stand in the lobby during a song because our son was disruptive. The church that was not able to provide child care in the nursery because of his special needs. The church I took my son to for healing, and they "cast the devil out of him." This huge famous church that showcased its deaf ministry and occasionally proudly handed over its pulpit to an evangelist with cerebral palsy, had no room for our tiny lovable son, Chris, who was born with blindness and deafness but sees and feels what most of us cannot. Our son Chris, who without hands somehow manages to touch us with warmth each day."

This story sums up many of the issues that face disabled people: the problems in relating to medical authority, the difficulty in getting their real voice heard, the exclusion from participation in  mainstream society and the abuse they suffer from people who want to 'heal' them. The additional vulnerability of children makes them even more at risk of these kind of experiences.

I want to explore some of the challenges that disabled children might bring to the urban church. I bring my own experiences as a disabled person but also an awareness that the voice of disabled children is little heard and that every disabled person has a different experience and carries the burden of different issues.

Safe spaces

My cousin, previously mentioned, stayed with my parents recently and calls their home a safe space. She suffers from Multiple Chemical Sensitivities and can quickly be made unwell by perfumes and furniture polishes and the like. It is the kind of condition people make jokes about but it is very isolating when you suffer from it. But her use of the concept safe space rang bells with me. A safe space is very important for disabled people -- it is a space which is physically accessible but also here you are welcomed in a nonjudgemental and non-patronising way.

We would all like to think that our churches are safe and welcoming spaces. Every church calls itself friendly! But this is often not the case for disabled people and disabled children. The issues, however, can be complicated. Let's examine the issue of incense. I used to have no problem with incense, I was brought up as a Baptist and incense seemed very exotic and quite exciting. In recent years, however, I have found that incense aggravates my sinus problems and leaves me feeling very uncomfortably locked up. I am therefore very reluctant to attend services where incense is used. I have heard similar stories from parents whose children suffer from asthma. Incense does not make things impossible for me but it does turn a church into an unwelcoming and hostile place. I've heard one Roman Catholic priest say that the asthma issue has caused his parish to give up the use of incense altogether. Yet alongside these perspectives we also need to hear this voice

Kathy Lisner Grant, an adult with autism, articulates the importance of finding a spiritual home in the Orthodox Church: ‘ … as a person with autism, the Liturgy appealed to all my senses. For my eyes, there were icons of the saints, the Theotokos, and Jesus. For my nose, there was the incense that the priest used. For my eyes, there was the music, because the entire service is sung. (Quoted in MT Burke et al)
But the issue has some more subtle undertones. Within the Anglican church it is a key point of tension between the high church and low church. Opposition to incense is a theological battleground where the experiences of disabled children can be used by the different parties for their own interests rather than in the interests of disabled children.

The wheelchair syndrome

Disability is often associated with the use of a wheelchair. The wheelchair is the symbol of disability in our society -- think of all those irritating disabled parking bays which use up the best parking spaces in a supermarket car park! Facilitating wheelchair access is also a headache for many churches. But my particular disability gives me a somewhat different perspective. I welcome the disabled parking bays (if there are any free) but, generally speaking, places that are good for  wheelchair access are less good for me I have painful feet which have no problem with stairs but I do mind long corridors with gently sloping ramps less helpful.

This alerts us to the different experiences that people with disabilities have, as the discussion of incense has already demonstrated. People who are born deaf often become part of the deaf community - the community has its own language, its own culture and its own churches. It is a very different experience from someone who starts to suffer from ME in their 30s. Many people don't accept ME as a real disease, so it is often difficult to be accepted as a person with a real disability. Some people join ME pressure groups and build a new identity around their condition, but this is often criticised by psychologists, doctors and other therapists for creating a sickness identity based on an unreliable diagnosis. So whilst we use words like disability to describe a particular condition, people labelled as disabled may actually have very little in common. Perhaps what they have in common more than anything else is their marginalisation by the wider community! This has encouraged the development of what people call the social model of disability. This is contrasted  with the medical model. The medical model sees a person's disabilities as residing in their own impaired body, their main need is for medical interventions which can help them overcome their bodies' inadequacies. The social model, on the other hand, recognises that people have physical impairments but believes that the disability -- the lack of ability to do things -- is created by society not by their body. So a wheelchair is only disabling when you have to climb stairs to get into a building.
We would not call someone disabled if they were unable to climb a rope to get into a tree house, just  hat the treehouse was inaccessible. The social model has been an important component of the political campaign for disabled people's rights, it can be rightly criticised for, at times, failing to pay enough attention to disabled people's actual embodied experiences but it is a helpful tool for enabling us to look at things from a different perspective.

ADHD and worship

When I was the pastor of the Church in south London we had a young toddler who was very lively. In fact he was pretty uncontrollable and would have preferred to run about unhindered for the whole service. He was thoroughly disapproved of by a number of our more conservative members but his mother was our only musician so he pretty much came with the territory! Some years later they moved to Germany and he now has a diagnosis of ADHD and attends a special school. ADHD (attention deficit and hyperactivity disorder) is a controversial issue and no one seems very sure where ADHD stops and autism begins. They provide a challenge for those people who want to see  disabled children included in school and other activities. I know of a school in East London who did their best to include an autistic boy but had to give up when other pupils were cowering under their desks in fear of his violence. It is, also, a modern challenge for many churches to know how to include small children, now that we don't find it culturally acceptable to force them to sit still and completely quiet. Some churches specifically advertise 'noisy services' so that parents can feel comfortable about bringing young children to church, but what about those children who seem particularly disruptive? Do they need to be labelled as autistic or suffering from ADHD and drugged up with Ritalin? Or is there some better way in which we can express the all-inclusive love of Christ -- which is, after all, what we are meant to be about?

I am sure we would all like to think that we are inclusive but how much are we prepared to change, for his to become a reality for disabled kids - and would including disabled kids mean that people looking for peace and quiet are excluded? No easy answers I think. Jeff McNair argues that the mainchurch service should embrace noise and disruption and not expect people to be quiet and solemn. Quiet and stillness could be provided for in the secondary services.

Miraculous healing

Healing is a controversial issue. Some believe that miraculous healings are a necessary part of the mission of the Church, others believe that they were a temporary phenomenon of the early Church and no longer occur. I don't want to get involved in this argument but I want to explore briefly why healing can be an uncomfortable issue for disabled people. The following quote by Samuel Kabue, a blind African theologian illustrates this well:

"On Sunday afternoon I crossed the town with two friends, David and Bernard, Bernard had substantial residual vision, so he acted as a sighted guide for David and me, as both of us were totally blind. We met a woman preaching at the market gate. We had no intention of listening to her, but some people intercepted us and pleaded with us to have the woman pray for us to recover our sight. We were prevailed upon and we found ourselves kneeling before the woman. After the prayer, the woman declared that we had received our sight back. Everybody rushed around us, and for a time I thought my friends might have received their sight and that I was the only one left blind. People started placing all sorts of items such as potatoes, pineapples, bananas and sugarcane in front of us and asking us what they were. My friend Bernard kept shouting what these were, yet since they were being brought rather close to our eyes and David like me was not responding, I knew that he could still not see and Bernard was just using the little sight we all three knew he had. Every time he responded, there was pandemonium -- shouts and ecstasy made the crowd continue to swell.  Although Bernard may have been under the delusion that he could see better than before, I must say I was personally very irritated at his response because the more he named objects, the louder the  shouts of excitement became. The crowd was getting bigger, with nearly the whole market coming to witness the healing, making it impossible for us to move. (Fritzson and Kabue p34)"

In this instance the desire for a miracle has overridden the ability of the crowd to actually listen to the
disabled boys. This is very different from Jesus in the Gospels who never pushes healing on people but first enters into a conversation with them and asks them what they want. Another problem that disabled people have with contemporary healing is when the failure to heal is attributed to the sins of the disabled person. It is difficult to overemphasise how offensive this is to disabled people, nothing is more likely to turn them away from the church, and, I would suggest, nothing is more likely to besmirch the good name of the Church. This issue is explored at a website www.whereisgod.net where a helpful booklet is also available that gives a good introduction to the experiences of Christians with 'invisible disabilities'.

Listening and including

Most of the problems with healing in the Church are created by people with an overenthusiastic  desire to see miracles happen, who don't spend the time to listen to disabled people and find out what they really want. Disabled people simply become the subject of other people's desires. It is this which is so frustrating for disabled people. Their experience is by and large one of marginalisation by mainstream society, they are disempowered not so much by their own impairments but by people's  ttitude to them and the inability of our society to include them with dignity and respect. It is a shame when the Church fails to offer a different example and a disgrace when it marginalises disabled people even further.

It is my belief that disabled people and disabled children actually have much to teach the Church. The
theology of the blind theologian John Hull is one example, as is the amazing witness of the L'Arche communities where people with learning difficulties are included in a remarkable way. But perhaps more important are the small lessons that can be learned in our own churches as we try to find ways of including disabled people in our congregational life. It is a beautiful thing to see marginalised people finding a place where they are truly loved and accepted. A place where they can make their  own contribution to human flourishing. Anyone feel like giving it a go?

James Ashdown - CANDL Project Worker
References and contacts
Anne Fritzson and Samuel Kobia Interpreting Disability WCC 2004
Jeff McNair http://disabledchristianity.blogspot.com/
Discussion of issues related to Christianity/theology and persons with disability
John Hull http://www.johnmhull.biz/OnBlindness.htm
a number of interesting resources
John Swinton Building a Church for Strangers and many other resources at
http://www.abdn.ac.uk/cshad/resources.shtml (Centre for Spirituality, Health and Disability)
L'Arche http://www.larche.org.uk/ an international federation of communities for people with learning disabilities and assistants.
Mel Dugosh Inclusion in Church Communities http://www.tsbvi.edu/Outreach/seehear/fall97/church.htm
MT Burke, JC Chauvin, JG Mirati. Religious and Spiritual Issues in Counselling Application across Diverse Populations. Psychology Press 2004 ISBN 15839137 26
Roy McCloughry Making a World of Difference SPCK 2002
Through the Roof www.throughtheroof.org  a Christian disability organisation working to change attitudes in churches and wider society towards disabled people and disability.
Wayne and Cherie Connell Have a Little Faith -- a guide to administering to believers living with chronic illness and pain www.whereisGod.net
You can download a pdf file of this paper from our website.
If you want to respond to any of the above points, or follow-up any of the ideas, please do get in touch with us at CANDL.
Tel.: 020 7729 9701 E-mail: candl@barnardos.org.uk
Website: www.barnardos.org.uk/candl
Address: Barnardo’s CANDL Project, Unit 2, Peterley Business Centre, 472 Hackney Road, London E2 9EQ

It is better to light one candle than to curse the darkness

Friday, January 25, 2013

Personalizing your computer

I realize that most people are MUCH more tech savvy than the cuter half and I.
They really would have come up with this one TOTALLY on their own.
Not kidding, they really would.

Recently we went to a BIG COMPUTER STORE. We had gotten some stuff for the holidays and I needed to learn HOW to make it all work with all my other stuff on our computer. In the last 6 months we had been hacked, we had been virus-ed upon and we had all our personal information stolen.
I was at a loss. I have managed (or mis-managed) the tech in the house ever since we got a computer. I have made NUMEROUS bone-headed mistakes and I have also done things that most computer places haven't done and fixed things myself.

I have also done really stupid computer-related things too. Getting SPAMMED was a big one and I have been overtly cautious ever since.


A tech person at the BIG COMPUTER STORE gave me a GREAT idea. This is something we should have done AGES ago. We are separating the computer stuff. The boy's stuff goes in HIS section. The papers, the access the scanning. It is ALL separate. ITS GREAT.

Actually, I am more psyched about this because there is stuff I just don't want him having access to. I am NOT comfortable with him having unlimited access to accounts where really it is none of his business.
The cute one and I have a life outside of him.
OK, no we don't. But darn it we are trying to have a life outside of the boy.

Shoot. Now that sounds pathetic.

The pluses for the boy having all his stuff separate?
#1. I DON'T Have to SEE IT.... Big YEA!
#2. He doesn't get free access to every single stupid website. I can control where he goes and what he does when he is there.....I love it....no more bogus viruses, Trojans (not the fun kind), or nasty worms popping up with a day or two dealing with the computer company trying to fix it.
#3. A semblance of privacy. Yeah, dumb, but when you are sharing a computer and files with others there is a certain sense of intimacy that comes with that. Families are supposed to be in each others stuff. I akin this to reading someones diary....which can either be boring or some stuff you would really rather not know.

Recently the boy has been sick....really sick. So sick he got sent home from school and can't go back until he gets to the doc sick.
We have insisted that he keep up with the homework. He has done pretty well. He has finished projects. He has sent in his daily work for his classes and he has organized himself to finish as much as he can at one time.
He sounds sicker than a dog.
He is bored at home and wants to go back to school....I guess making it so he can't leave his bedroom, he has little or no access to anything fun and he isn't allowed to call or invite people over....kinda puts a damper on things.

Making the computer stuff separate takes more work on the cuter half and my part. it doesn't allow for not signing in and out of the user thing. It does make it easier in the long run when the boy has multiple papers to do and have access to online classes.....and I don't have to think about what else he needs to do or what else is going on.....
and he can't read our stuff either.

Besides who would want their adult teen to read there stuff anyway? Not like they would pay attention or really understand what the parents are talking about anyway.
Privacy, to my Aspie teen, means telling his mom he "needs a private moment." EWWWW I don't want to know about that.....

Ultimately it is the best of both worlds.

Monday, January 21, 2013

Is it morally wrong.....

to take a bottle of shampoo and dump it over your greasy aspies hair because they are lazy turds and refuse to wash their hair.

The boy wants longer hair and refuses to take care of it.
At this point looking at him makes me want to gag.

I think either a shaved head or lazer hair removal is a viable option.

This is beyond disgusting.

Thursday, January 17, 2013

AN Artist in Residence

PLEASE take a look at this link and if you are able to help a wonderful artist with her residency please do so.
She has taken some WONDERFUL pictuures of my family and my Mom and she is truely talented. She also did an amazing job with our son and taking pictures of him is no easy feat.


Thursday, January 10, 2013

No one owes you anything.

This is one thing that drives the cuter half and I half of crazy. We were talking about things and it came up that someone had not done something they needed to do and it was really pretty annoying. Maybe we were brought up different. The mantra when I was a kid, "Do it (disagreeable thing) and get it overwith. Then you don't have to think about it any more and you are done." I used to hate it when my Mom said that but you know what, she's right. Just be done with whatever and be responsible enough to get it done.

Most people believe that some one (the mythical being) owes us something (whatever it is).

The boy tells us regularly that we owe him. What we owe him I am not sure. We provide him with a good home, shelter, food, clothing, education, free tutoring, mental health, and health care. He goes on nice vacations, has anything he could ask for....and still thinks he is owed much, much more. I have gotten to the point where if the boy tells me "You OWE me." I will turn around and walk away from him. It drives the boy spare when he thinks I am ignoring him....I am not but I do not feel or believe that I OWE him whatever it is he thinks I do.

I think this comes down to personal responsiblity. People like us are very busy trying to teach our Aspie how to be responsible for himself. We are constantly reminding him that he needs to use good hygene, he should change his sheets, he needs fresh socks....the cuter half and I are tired and worn out with reminding him.

So we aren't.

Doing a constant reminder thing witht he boy is really terribly annoying. I told him to set up a reminder notice on his phone calendar if he needs to remember things. I am not able to constantly remind him to use deoderant or brush his teeth. Lately in the morning I am barely awake when he goes to school. Expecting me to remember to do whatever isn't going to work until I have had a decent cup of coffee.

Actually, all of this entitlement talk reminds me of a class the boy took. It was an exercise class.....I wish the district was still doing it but....not my choice. Anyway, there was a teacher who told the boy, "I have watched your parents and they aren't going to do it with you or for you. They want you to do it on your own."

The teacher was right.
We aren't going to do it for him.

It really bothers us that there are people who feel so entitled that they aren't about to do anything but complain about what they aren't getting or aren't doing or having done for them. I know that I have been relatively independent for a long while....I have always had to do what I had to do to survive and there were some hard tough time when the boy was little.

Now things are different. I am different. I am supportive of the boy but I am not going to spend my time doing all this little things for him....I would love to be able to protect him. However my common sense tells me that it is a good thing that I cannot protect the boy. He has to grow up and do it on his own. A doc once told us that he is developmentally delayed by about 5 years. That being said, this was also the doc that told us to put the boy in a home and leave him there....I don't know how much validity I would give her overall diagnosis but I do think she was right about the 5 year thing......

I miss the little boy days. I really do. I miss the little red baseball cap, the light up shoes, the funky sweat shirts and the cute little boy things. The monsters, the castle toy with the dragons and the Thomas the tank engine.....but as time goes by things change. And that is OK it is supposed to change we aren't always going to like the changes but we do have to adapt to them the best way we know how.

I know I have refered to this movie before- Hope Floats. There is a quote that Birdee says at the very end, "Childhood is what you spend the rest of your life trying to overcome. That's what momma always says. She says that beginnings are scary, endings are usually sad, but it's the middle that counts the most. Try to remember that when you find yourself at a new beginning. Just give hope a chance to float up. And it will."

It might not always float up but I will repeat NO one owes anyone anything. My son is responsible for his actions and if he makes a stupid choice he has to lump it and live with it.

The cuter half and I will have to deal with the outcome; which more than likely will not be what the boy wants it to be.

Tuesday, January 8, 2013

Today's Quote

"Never explain, never complain."

I need to do better at both.

Friday, January 4, 2013

Swarms of ideas

This last week I have had gobs of thoughts about what to write about.
We have dealt with impossible finals study guides, a boy with a crappy attitude, practices, homework, watching the Truman Show....and making allegories.

Some of it hasn't been so much fun.
The cuter half and I were helping my Mom make a move. Fortunately, it wasn't terrible....it went well. The stuff she is getting rid of is stuff she hasn't dealt with or looked at in 7+ years. It needed to be reorganized anyway.

During the move there were a couple of things that the cuter half and I noticed. Most elderly peoople living in facilities did NOT have their furniture from their homes, pictures on the wall, their collections, books or family portraits. Statistics indicate that people who don't have their "stuff" are not as sucessful in their moves. My Mom has her stuff. Actually, I am very proud of how she handled this move. She did really well. She really was good about making decisions for herself. Who she wanted what to go to....if she didn't care, what she kept and what she gave away.....it was all there. She made the choices....and that is OK with me.

I see now where the boy and I get it from though. We are collectors....or horders depending on your view.
After many years of working in a museum I have what I call "this museum obession" with keeping like items together; sections or whatever. I like to have my stuff organized and kept in place.....Maybe that is why I am into "cases" and organizing by type. All those years in the museum.....it rubbed off.

The boy is a horder. His game obession is now almost scary.....he has more games than anyone i know. He has them by type, he has old ones, he has new....this is a kid who thinks a game from Goodwill is an acceptable present. The more out of print they are the better he would like it- it has to look cool. He thinks the older the game is the better it is and the more he will want it....We try to help him keep them organized....and he has sold a few....but there is still a monster pile under his bed, on his shelves and in the closet.

Now onto something completely different........
The cool allegory I mentioned earlier was really good. The boy was talking about Plato's Cave
If you don't know what that is here is a reasonable explaination

The Allegory of the Cave—also known as the Analogy of the Cave, Plato's Cave, or the Parable of the Cave—is an allegory used by the Greek philosopher Plato in his work The Republic to illustrate "our nature in its education and want of education" (514a). It is written as a dialogue narrated by Plato's friend Socrates and Plato's brother Glaucon at the beginning of Book VII (514a–520a). The Allegory of the Cave is presented after the metaphor of the sun (508b–509c) and the analogy of the divided line (509d–513e). All three are characterized in relation to dialectic at the end of Book VII and VIII (531d–534e).
Plato lets Socrates describe a group of people who have lived chained to the wall of a cave all of their lives, facing a blank wall. The people watch shadows projected on the wall by things passing in front of a fire behind them, and begin to ascribe forms to these shadows. According to Plato's Socrates, the shadows are as close as the prisoners get to viewing reality. He then explains how the philosopher is like a prisoner who is freed from the cave and comes to understand that the shadows on the wall do not make up reality at all, as he can perceive the true form of reality rather than the mere shadows seen by the prisoners.
The Allegory may be related to Plato's Theory of Forms, according to which the "Forms" (or "Ideas"), and not the material world of change known to us through sensation, possess the highest and most fundamental kind of reality. Only knowledge of the Forms constitutes real knowledge.[1] In addition, the Allegory of the Cave is an attempt to explain the philosopher's place in society: to attempt to enlighten the "prisoners."
Plato's Phaedo contains similar imagery to that of the Allegory of the Cave; a philosopher recognizes that before philosophy, his soul was "a veritable prisoner fast bound within his body... and that instead of investigating reality by itself and in itself it is compelled to peer through the bars of its prison."[2]

Anyhow, we were watching the Truman Show at one point, "They find that Truman has managed to overcome his fear of the water and has been sailing away from the town in a small boat named Santa Maria (the name of the largest of the three ships with which Christopher Columbus sailed to the New World). After restoring the broadcast, Christof orders the show's crew to create a large storm to try to capsize the boat, prompting a heated debate with his superiors over the morality and legality of killing Truman off in front of a live global audience. However, Truman's determination eventually leads Christof to terminate the storm. As Truman recovers, the boat reaches the edge of the dome, its bow piercing through the dome's painted sky. An awe-struck Truman then discovers a flight of stairs nearby, leading to a door marked "EXIT". As he contemplates leaving his world, Christof speaks directly to Truman via a powerful sound system, trying to persuade him to stay and arguing that there is no more truth in the real world than there is in his own, artificial world. Truman, after a moment's thought, delivers his catchphrase — "In case I don't see you... good afternoon, good evening, and good night" —, bows to his audience and steps through the door and into the real world. The assembled television viewers excitedly celebrate Truman's escape, and Sylvia quickly leaves her apartment to reunite with him. A network executive orders the crew to cease transmission. With the show completed, members of Truman's former audience are shown looking for something else to watch.

The boy came up with the allegory of the Truman show and Platos Cave.....there is more to it but it is a really good comparason. We were discussing this movie and how it would relate to his class and he mentioned,"I think I will write about how the movie is similar to the Cave and why it is that way." The cuter half and i were amazed that the boy pulled that out of himself and made it relevant.

I think that the boy putting the "think outside the box" thoughts in his brain is a great thing....pulling them out of his brain is a whole nother deal. It's harder. We work hard with him to get the ideas out and in reasonable order (unlike the blog today)...