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This article is very encouraging and gets at the core of all our 'fears of change in lifestyles' especially the labeled disabled. Somehow to be physically challenged gets muddled into dis-abled.
I just put two notes about this on our Facebook page which you can find at www.facebook.com/crcdisabilityconcerns. I'd like to encourage you and other readers to "like" this page. Mark
Love it! this is so important!
Thanks JJ. I'll spread the word to people I know in the Chicago area. Mark
Thanks for your great blog about accessibility and welcoming disability in houses of worship. Hope you and your readers will be happy to know that, in fact, you can post a review of the disability awareness of your house of worship on JJ's List. Any church, synagogue or mosque, anywhere, anytime. We believe that worship should be as accessible, welcoming and respectful of disability as any other business or service. Post your reviews and keep up the great work! Thanks!
Founder of JJ's List.
Yes, I pray that God will keep changing me too.
Yes I have experienced change for the better in other people sometimes and in my own life view. Only with God helping me/us can fundamental world/people view change. I believe with all my heart that with pray, especially for Wisdom and Patience all things are possible in Christ Jesus our Lord and Saviour.
So in this case, absolution would be a feeling of the listener: "I'm absolved of my participation in ableism and/or racism because I have (partially) listened to this other person." I'm hearing your say that the story sharing is more helpful in assuaging the conscience of the listener than in bringing about a deeper relationship between listeners and speaker.
Like you, I wish we could dispense with language of disabled and non-disabled. At the very least, I myself should be careful never to talk about disabled people, but instead use language like "people with disabilities." But even then, the term "disabilities" labels people resulting in "categorization and sympathy" as you say.
Loving as Christ taught us to love is so difficult. You are talking about the huge challenges in people developing real understanding of each other, and the exclusion of some people from participating "fully in human experience." But I would hope that people in churches (and society) will not say, "It's too difficult, so why try at all?" My work as director of Disability Concerns is motivated by the hope that real change for the better can happen in church communities.
Have you ever experienced a situation in which people without disabilities have experienced change in their consciousness and approach to people with disabilities? Or to put it another way, have you ever seen some barriers to participating fully in human experience broken, with greater relationship and participation as a result?
Thank you for your response and question. You are fairly on point in understanding my post.
Actually I am referring to a spirit state of the non'disabled' of experiencing a change of their conciousness and approach to so called disabled people.
Yes 'disabled' people have that label put on them and too often when seeking to participate fully in human experience, categorization and sympathy cloud the hearing and understanding of well meaning 'nondisabled.'
Your other mention of antiracism workshops and story sharing has been a bane to living and worshiping as one in Christ. Again 'story' does not capture the essence of experience and spirit.
Yet I have learned the hard way that 'story sharing' is an absolution experience not healing the story teller rather giving the partial hearer a sense of absolution just because one listened.
Great to hear from you. I hope you are doing well.
Have you done this before? It seems that you are picturing a group of people, some disabled and some nondisabled, with the disabled people sharing their stories and the nondisabled reflecting and interacting about those stories. Do I have that right? Sounds like it would be an excellent time of learning and growth for all.
I've done this kind of interaction before in anti-racism workshops in which people of color share their stories and the people from the dominant culture (the white people) listen and interact. It was very helpful to me as a white person to listen and learn.
I agree with you. In our case, it was that many people thought it was simply inappropriate to be video-taping or photographing in church. Period. That just isn't done in our church. But as you write in your example, the best case scenarios are when people are befriended and slowly brought to change.
For example, we had a community girl in our GEMS club who showed up at meetings dressed inappropriately--shorts too short, mid riff showing, etc. A member of the congregation who was decorating at church that night and saw her was appalled and thought we should simply ask her to leave.
However, this was her first night with us. She had been brought as a guest. After she had attended a couple of times, I pulled her aside and talked with her about WHY her clothing was distracting for others (she had never thought about it) and gave her some very tangible guidelines (stomach can't show, shorts need to be visible from beneath your t-shirt). She trusted me and the other leaders enough not to be offended and to understand why we were placing these restrictions on her. If we had "thrown her out" the first night, would she be a junior counselor today? Would she have been baptized? I don't think so.
Sometimes we have to turn away from the "immediate gratification" (just get rid of the problem) to doing the hard work of getting our hands dirty and walking alongside the person. And, admittedly, that's much harder to do.
Rich and Veronica,
Thanks so much for both of your comments. What we are talking about here is a truly RADICAL (in the sense of getting to the root) hospitality. Most of us are not up to the task. The cost seems to great. I think that it requires of us who are already in the church a willingness to greatly expand our idea of appropriate behavior while still holding people accountable for truly inappropriate behavior. AND it takes Holy-Spirit-Inspired wisdom to determine what is appropriate and what is inappropriate, along with a good dose of speaking the truth in love.
For example, is videotaping kids in church inappropriate? I hope not. I just did that a couple weeks ago myself. But is standing in front of others who are seated behind you inappropriate? Yes, it's inconsiderate of others. So maybe the video-tapers could be encouraged gently to step to the side of the church to avoid standing in front of others.
An even more pointed example, I know a church who had a man attending who had an intellectual disability. He had a habit of kissing women in church on the lips - in the narthex and even sliding down the pew to do so. Clearly inappropriate, and not be be tolerated. However, the church firmly believed that God had led him to be part of their fellowship. So instead of actively throwing him out, or making him feel so unwelcome that he left on his own, they asked other men in church to befriend him and stay with him anytime he was in the church building. A schedule was organized so that he would have at least one friend with him at all times. They explained to him that his kissing behavior was inappropriate and that they would help him remember not to do it. Over time, real friendships formed and the behavior ceased. Praise God for this church's radical hospitality. The whole congregation grew through the experience, but upfront there was a cost in terms of time and emotional energy, and a willingness to learn how to enfold and truly love this man in a way that embraced him and held him accountable. Isn't that a picture of how healthy churches embrace ALL of their members?
I am thankful to the author for bringing awareness of physical and mental disabilities that we need to be more mindful of.
However, I say a giant "Amen" to Ruth. I am equally concerned by what she addresses because I've lived it. I belong to a relatively conservative, small-town CRC in the Midwest. Our GEMS and Cadets and youth groups were bulging at the seams, largely with unchurched kids, which seemed impossible since everyone knew that "everyone in our town goes to church." The congregation was ecstatic--this is what we were supposed to be doing! Keep it up!
Then these kids started bringing their families into worship. Kids with two dads. Kids whose mom was pregnant for the third time with no dad in sight. Kids whose parents jumped up in worship to videotape their kids up front. Kids whose families didn't know the unwritten rules on where to park, where to stay with their juice, what toys were appropriate to play with in church. Kids whose families were dressed inappropriately.
In short, they were not welcome. The families drifted back out the door, the kids drifted out of the programs, and the church heaved a collective sigh of relief.
Until we get over this mindset that everyone worshipping next to me has to be just like me (physically, mentally, alike in spiritual beliefs, same values and work ethic), we cannot fulfill the Great Commission. It's why so many non-denominational, evangelical, charismatic churches are springing up--and doing such a fantastic job of bringing these people in.
Thank you for bringing these issues to the forefront.
The words are important--but the fact that someone bothered to think about them is what really matters.
I'd like to see individual churches honestly discuss the question, "Do we really WANT to be inclusive?" I suspect that if most of us were truly honest, we'd be surprised by our answers.
I also wonder if "inclusive" extends to someone with lots of tattoos and piercings? Someone who's homeless and maybe a little dirty or smelly? Someone who doesn't dress or look or behave like us? Do we really want "those kinds of folks" in our churches?
I'm pretty convicted by my own answers.
Spitfire, Thanks for your kind words. I don't always live what I wrote - "Love is the closest we'll get to heaven right now." Nor can any of us, but this is what the church needs to be all about. As you say, living with MS in many ways depends on how the people around you respond to you. I hope many more people will read what you say. One of the best ways that the church can learn better how to love is by listening to and learning from people with disabilities, with the people with disabilities as the teachers and the temporarily able-bodied people as the students. Though the Bible says that those whom many judge to be weaker members are "indispensable," (1 Cor. 12:22) many people are put on the shelf when they develop disabilities of one kind or another. Your example of judgmental comments you have received is one way people shelve people with disabilities. Another way is by ignoring them. Still another, not asking people with disabilities to contribute their gifts of time, talent, and treasure in the ministry of the church. Thanks so much for sharing a gift in this forum, and God's blessings! Mark
This is a very intriguing article! I was diagnosed with MS in 2005. I am sitting here wondering about my wording...thinking about it, I have said that I have MS, and I have said that I live with MS. I think it depends on the day-how good or awful I feel. If I feel decent, then I live with it-it is part of who I am. If I am struggling, then I have it-it is a monster that has taken me hostage. The important thing to remember is that a person may have a disability, but that does not mean the disability has to have you.
Attitude goes a long way in coping with illness. Most chronic illnesses are ‘invisible’; not seen on the outside by others like a cast or bandages, but felt, seen, and heard on the inside by the person who is diagnosed with it. Keeping a positive outlook can be a difficult task, especially when those around you say that you don’t look sick, and tell you to try harder because it’s nothing but an off day. I believe that the people around you-your support system-lends a hand in what you perceive you identity to be. For example, if you are surrounded by people that are willing to learn about your illness, and accept it when you say that you have to cancel plans, or have a nap, then you will be able to focus on what it takes to help you feel better. If those around you have not attempted to learn about your illness, and make you feel guilty with thoughtless judgmental comments, well, it is very difficult to have any positive thoughts or feelings about the illness or yourself at all.
It is human nature to identify ourselves with roles-mother, father, caregiver, sick person...but I feel that it is the attitude behind those labels that makes a difference. Attitude and perception can make or break a person, so it makes sense that one needs a compassionate support system. With support, we feel isolated...think of a time when you had the flu and someone at home helped you out. Now imagine if they had of been impatient and treated you as if you did this on purpose, just to mess up their schedule. Not nice. I feel that disability or not, our identity is shaped by our own thoughts and by the reactions of others towards us. Perhaps those of us who are offended when their disability is brought up have an inward sense that sickness equals weakness, and refuse to ‘give in’ to it...what we are taught growing up in our community plays a significant role in how we perceive ourselves and the world. Sadly, it seems that we place a higher value on how much work we can do in a day, than we do on taking care of the gift of life God gave us. In too many cases, a disability throws up a wall that separates people rather than pulling them closer. The person with the disability is not only discouraged with their limitations; they are too often left with feelings of uselessness and loneliness. It can be quite a circle.
There is no simple response to how people think about their disability in relation to their identity-each response is as unique as the person and their circumstances.
Mark, you said, “I don't know what heaven will be like, except that it will be good. For now, while I'm still here on earth, I hope I can remember that different people can respond in very different ways to the same kind of disability, partly based on whether or not they consider it part of their identity. I hope that that knowledge will help me better love each person I meet. And love is the closest we'll get to heaven right now.” ...that is music to my ears! —isn’t that how we are supposed to treat all people-with love, understanding, and tolerance? If we could all make a conscious effort to follow your example, the consequences would be amazing!
I have a minor 'disability' and applaud this two paths approach. It would be beneficial for non-disabled people to learn/discuss the spiritual and psychological 'place' in their minds that sometimes 'upsets' them when faced with interacting with people they perceive and want to respond to as 'disabled.'
What I would like to see is people who love the Lord being actively included in the worship service.
Not simply the best musicians or speakers or readers but the ones whose love for God shines through.
We have all seen this and been taught, moved, blessed by people who worship Him from their heart.
Like the writer before me, I grieve when someone reads the scripture and they have not practised and don't really know what they are reading.... but i love it when anyone reads who obviously cares about what it says, no matter how they read it.
I appreciate the skills of an accomplished reader but it grieves my heart just as much if they don't mean it.
Yes, I think of it as a visual variation on the multiple instruments that the psalmist talks about in Psalm 150. My own congregation, Crosswinds Church, has a collection of satin solid-color pennants mounted on dowels for people to use in praising God. Many of the children (and some adults) love to wave them during songs.
Thanks for sharing, Mark. I love Barb's idea of using ribbons for praising God!
I liked the way this piece brought me into fresh ways of thinking about disability.
Isn't this a vexing question? I've felt torn about this SO many sundays. I LOVE the value of full participation, AND I grieve when people who cannot read well are doing the scripture reading. Sometimes I'm ashamed to say I'm totally distracted by inept liturgical dancers or singers or whatever.
But yet..... seems to me that making sure people are being nurtured to grow in their abilities is an important dimension of this discussion, and then expecting that people will do their best and challenging them to do so ..... that's another important dimension. I'm thinking that worship planning committees should be obligated to coach worship leaders so that they feel supported and encouraged and enabled.
I'd like to think that congregations could see to it that people get coached and trained and helped to do their best. And once that is in place, then encouraging broad participation is the value that trumps excellence in performance. The kind of excellence I most want to see is excellence in being a community of inclusion, participation, grace, and diversity.
Thanks for these statistics, Linda. Yes, very easy to imagine. No wonder people who are deaf and hard of hearing find it frustrating that hearing people often expect them to be fluent in reading lips.
Having worked with Deaf, deafened and hard of hearing, I quickly learned that only 30% of English sounds are visible on the lips ... not much. Everything else happens inside the mouth and throat. Imagine 70% possibility of misunderstanding.
You could title this "What would Karma Do". Thanks for bringing this to our attention
Just read a report on disability and employment dated April 20, 2010. In short, as bad as unemployment is, it's 40% worse for people with disabilities.
:-) It helps to say them out loud. Here are a few more:
Gold bands form part
Bruce grips pink chips
Blue plant beach man sold log, threw sticks.
Mime whiz: funny
I never would have figured that out on my own. Thanks for decoding the proverb.
Steve, thanks so much for telling your story. It shows that being INTENTIONAL about inclusion can change the entire culture of the church for the better. I'm delighted to hear that Friendship isn't just a program that happens on a weeknight at your church, but has become a vital part of your church's ministry.
Here's a follow-up. After writing the blog entry above, I sent a note to Mr. Canary about it. I received the following response which appears here by permission of the author. Mark
Thank you so much for you kind note.
My sister and I own our company, our Dad developed the Mr. Canary feeder. We are the only two actual employees of our company, we rely on our contracted workforce 100%...and they never, NEVER let us down. Honestly, it's the smartest business decision we ever made, and quite frankly, it's probably the reason we're still in business today. When we entrepreneur-types begin thinking about starting our own business, our plans usually focus on the idea of doing the thing we're good at and the things we like to do. That's what lights the entrepreneurial fire, but it's a bit of a slippery slope. The reality is that once you start a business there are so many things to manage that you may NOT be so good at, that you can end up with very little time and energy to devote to the things you CAN do well. That's the beauty of our fabulous workforce, they do what they do so well (production/shipping) that we never have to worry about it, which gives us the time we need to devote to sales, marketing, product development...the stuff we like. These overlooked and underutilized workers are a treasure trove for small operations, it's not altruism, it's good business. We mention it on our packaging because we want to spread the word. This collaboration strengthens our community...and it strengthens our business. What could be better?
You can't begin to know how your note lifted my spirits. Today, for all kinds of reasons, it's especially appreciated.
As Friendship Ministry leader, I've tried to incorporate members of my adult class into different areas of ministry in our church. We've participated in worship services by singing songs and reading Scripture passages. Our class has been involved in greeting and ushering before the service. Several of them have helped in our monthly Hot Meals ministry to the needy in the neighborhood. One person has signed up to be included in our new small group program. Finally, recently our elders conducted family visiting. We included the group homes where several of the class members, who are members of our church, live. Even though they might be at different functioning levels, they are like the other members of the church in that they love to participate. Their favorite way to participate is by coming to the church potlucks!
The more they participate, the more they are accepted and included by the rest of the congregation. Steve
What a great insight. I never thought about that before. We all use "accommodations" all the time, yet those accommodations that are used mostly by people with disabilities are the ones that carry the stigma.
Will a time come when people view these kinds of accommodations not with stigma but with appreciation? Already we consider eyeglasses sometimes as fashion accessories. See this article in Fast Company magazine for a glimpse (with a caution about some inappropriate language):http://www.fastcompany.com/magazine/142/super-human.html
Having been side by side with my mom through the last 20 or more years of her "golden" years (she is 96), I can identify with all of the stigma and denial of being labeled as disabled on her behalf. I encourage people to look beyond her wheelchair and the confusion to who she is. As I continually have to remind mom that she is still a child of God and holds value in her identity in Christ, so do I need to gently remind others.
The need for assistance is a struggle that we have had to work with piece by piece. Isn't it funny how we have so many things to make our lives more convenient (remote controls, dishwashers, washing machines, dryers, little things on our key chains to lock and unlock our cars, automatic windows and doors, garage door openers - you get the point) and yet if using a hearing aid or a walker would make our lives easier...
Having a disability is complicated. Having to admit we need help when we used to be the helper is hard.
Some seniors I know do not want to admit their disabilities.
This makes things frustrating. For example, in our church services we have headsets that are for the hearing impaired to hear the service better. Almost all who complain they cannot hear the words will not even try the headset. It is light weight, easy to use (one dial) and works well -as I use it myself regularly.
Another example is refusal to use the elevator.
But it is not just seniors. Many younger members do not want to admit either.
One thing is that there seems to be a lot of shame attached to being 'out of order' physically or mentally; whether it is temporary or if we are chronically ill or disabled. Personally I don't have this anymore. I have had to accept my illnesses/disability in order to be a peaceful, functioning person.
My illnesses/disability are not a reflection of my worth as a person; they are just part of me. I am as valuable as any person God created.
I wonder if some of us believe we have to be strong, not complain, accept what God allows without complaint . . . and if we admit it or show it then we are not strong. Which makes us less than as a believer.
Of course loss of independance is a hard issue too and it is hard to face the pain of that.....
What can we do to help each other accept our illnesses and disabilities?
the link is not clickable
Mark, I am currently the leader of our church's Friendship Group which is made up of approximately 12 intellectually disabled adults from 6 group homes in the neighborhood. Our class time includes singing (acapella), Bible lesson and prayer requests. During the last 2 years our class has participated in the morning worship service on at least 3 occasions by singing songs and reading scripture. Members of the class also enjoy being on the ushering and greeting schedule. My point is, when you say that growth is an important part of excellence, we need to realize that, no matter how poor it may sound to our ears, their active participation is a time of growth, both for them and for the rest of the congregation. I belive it is definitely a time of joy for God who receives their praise. When my class of disabled adults, or the young people of the church participate in the leading of worship they aren't just being thrown up on stage. They are being encouraged to develop their gifts to the glory of God. Most importantly, when you say that the participation of these people in the worship leadership is less than the giving of our first fruits, I feel this is a very hurtful statement. Worship, whether private or corporate is not about us and our abilities. It is about giving praise and honor to our Heavenly Father.
As an added comment to this discussion, Pastor Bill Van Den Bosch sent me the following note on March 4 which is copied here by his permission, "We had a retreat today with some folks from Oakdale that are part of a sermon training team and we discussed this very matter. We settled on an an understanding that whatever definition of excellence we want to settle on (technical excellence, presentation excellence, etc) it should create an inclusive worship that recognizes the presence and gifts of all and not an exclusionary worship in which the presence and gifts of worshipers - including those with disabilities - are not seen as "good enough" or bringing less than the best to God. The challenge that we have is that it is easier to measure the excellence of musical or verbal presentations than it is to measure excellence of the heart."
Thanks for your comments. Maybe an illustration would help most to make my point more clear.
Our family has attended an annual diversity service the past several years which has been sponsored by our classis diversity team. Those services are rich with participation by Latino, Lao, Vietnamese, African- and European-American people as well as people with disabilities. One of the women who usually participates in leadership has cerebral palsy which makes her speech somewhat difficult to understand. That fact alone would be enough for many worship committees to exclude her from participation even though she has important things to say and pray. They would leave her out because she does not reach a standard of spoken excellence that they are looking for. She has spoken and lead in prayer in the past to the great appreciation of those present and to the greater glory of God.
It seems to me that many people view worship as a performance which must attain some standard rather than as a dialogue with God (which I believe is the higher standard to which James calls leaders of God's people). As a result, many people with disabilities are written off by worship committees for worship leadership with the reason given that the worship service must be excellent (using the achievement of a certain human standard as the definition of excellence).
I can easily imagine a person who is a polished speaker by human standards who detracts from dialogue with God in a public worship service, and a person who is not a polished speaker (like the woman I refer to above) who in leading worship draws the entire congregation into deeper dialogue with God.
Is my point more clear now?
Thanks! It's fixed now.
the link isn't clickable
I appreciate your article here, Mark, but I think perhaps I disagree a little.
Excellence is really a funny term because it means different things to different people in different situations. I think one thing you're failing to point out here is that growth is an important part of excellence. If someone sings or reads poorly and no one says anything to them or doesn't help them improve, you're doing that person a disservice just as we would if they were having trouble in any other aspect of their spiritual life and we didn't come alongside.
Additionally, worship leadership falls under the broader category of teaching/leadership in general - which James mentions calls us to submit to a higher standard. I think throwing just anyone up on stage in worship is a disservice to them and the worshipping body. What's more - worship is a firstfruits offering and giving less than our best is a real issue.
I've met a lot of people in my time leading worship who really cared deeply about God and loved him and maybe even loved worship, but who didn't have the gifts to lead it. In a sense, it would be like throwing a cello at you and asking you to play cello in front of church, even though you probably never have.
I guess I'm really not sure what you're arguing for?
I saw a similar article (or maybe it came from the same study?) recently about people with mental illness. The overall public perception is that the mentally ill are "dangerous", but those living with mental illness are much more likely to be the VICTIMS of a crime than they are to commit one themselves.