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Everybody belongs. Everybody serves.
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This is a strange comment. Of course it matters, because truth matters. Secondly, by definition, victims are hurt by the actions of others, so of course they would care. We don't need to add to people's pain by our own lack of understanding. Taking the time to understand people's precise situation is the motivation behind "labelling". Understanding that we are all damaged people is a good perspective from which to start.
Great insight! The people with disabilities that get the most media coverage (and let's throw the Jerry Lewis telethons into this mix too) are those who, it seems, consider disability as an intruder in their lives, not part of their identity. At least, this is the narrative that the media seems to understand. I would guess that most in the media do not understand people who embrace a disability as part of their identity in the way that civil rights leaders embrace their ethnicity as part of their identity. Therefore, disability also is not portrayed as part of the diversity of human nature, but only as an intruder that must be overcome.
What differience does it make whether a damaged person is properly labeled? The victim doesn't care as long as it's not hurtful.
Thanks Mark for asking this question. Indeed, our culture has reduced diversity to ethnic diversity. It is largely, as you say, caused by the media.
Another reason is possibly the advocacy of social movements or causes - the momentum or power of a lobby or movement. The ethnic diversity cause can be traced back to the civil rights movement in the 60s, spearheaded by such powerful and charismatic leaders like Martin Luther King Jr. Their movement is widespread and has captured people's imaginations over the years, and entrenched in folklore, and cultural memory. We don't have anything similar, not that I know of anyways, in regards to disability diversity.
There are famous people with disabilities in our culture but if I am not mistaken they tend NOT to advocate for people with disabilities to be included, but advocating for cures. Two that I can think of is Terry Fox in Canada, who is entrenched in Canada's cultural memory but Terry Fox was running for a cure for cancer. And the other one is Christopher Reeves (a.k.a. Superman) as a quadriplegic (sorry if I misspelled here) advocating for medical research. So, our culture collectively lacks the imagination to think of diversity as including disabilities because their collective imaginations and collective memories have not been shaped that way.
My church makes sure that the building is accessable. Beyond that, not much.
As sad as it is, I suspect it comes down to the simple fact thay "they" make us uncomfortable.
Anyone who's different, who forces us out of our comfort zone, who requires some kind of altered approach.
This past weekend I spoke at a retreat--one of the guys had a rare illness that causes inappropriate vocalizations at times. Now remember that I'm in a wheelchair, that I depend on accommodations and grace, that I should get it. And still I had to work to avoid feeling irritated during the first session because my wonderful words were interrupted!
Isn't that pathetic?
God reminded me of something important--IT'S NOT ABOUT ME!
He was a good guy with a big heart, and we had a couple of interesting conversations. He isn't his illness; he's a child of God.
Why is that so hard to get through my thick skull?
What Michael B wrote above reflects my thoughts precisely. Indeed a new and helpful perspective for me. Thank you!
Judy, What a beautiful story. Thanks so much for sharing this. Mark
While growing up I remember my dad telling us kids that --- should we ever see anyone at school who didn’t have a friend, we were to go over and befriend that person. And we were always to be kind to those who have handicaps.
So when three deaf girls joined my all hearing 6th grade class, I knew in my heart what dad would want me to do: befriend them. And that is what I set out to do. At the age of 12, I went to an evening class (which was actually taught by one of the deaf girls’ mom) to learned sign language. With one of my older sisters helping me, I went to class and learned and practiced sign language for quite some time. After lots of practice, I made three new friends.
Not long ago, I had a sign-language conversation with one of my deaf friends of forty years ago. She and I were back in our home church and we had to opportunity to reconnect our lives after all this time. What was amazing to me and to others standing nearby, (including my deaf friend’s mother) was how well I could remember how to sign. I’m sure that was a God-thing.
Why was it so important to my dad that I included and befriended persons with special needs? Although he never said it, I knew. It was about the love he had for his own son who was born severely handicapped. Joel, who now would be 59, didn’t live beyond three months of age. But his short life brings a strong and healthy message: love people, especially those who have special needs. I am still gripped by my mom’s story of how she took a five pound baby home from the hospital who died three months later --- at the same weight.
My dad met his own handicaps and disabilities during the last several years of his life. Because of Parkinson’s disease, my dad’s own ability to walk, to care for himself, and to live independently caused him to be the recipient of his own teaching: be good to those who need a friend, especially to those who have handicaps. We as family did the best we could.
Three years ago my dad was set free. His time was over – his suffering ended – his handicap was healed. Yes, God called him home. His homecoming was special, I’m sure, because he was reunited with his son – his son he hadn’t seen for 59 years.
I imagine Dad and Joel, standing tall and standing strong – reuniting – fellowshipping – and befriending each other – all the while…
Standing in the presence of the One who healed them.
Judy De Wit
You're really talking about the "nuts and bolts" level of caring for people. Interesting that we'll send a missionary around the world (as we should) but ignore the simple needs of someone right in front of us.
When I first read your article, I thought, "How far do we have to take this?"
The answer, of course, is "As far as Jesus went."
Yes, I'm glad you mentioned that Heather. My church also recently began offering gluten-free elements. Even to those of us who aren't allergic, it sends a strong message of 'we care'.
Without a doubt, all of our elements are 'glutten-free' given their small size. Oh no, that's spelled 'glutton'. ;-)
Great point. I've heard of people who have brought their own gluten-free bread from home. It's so much better when the church leaders accommodate this need. Otherwise, if someone with problems with gluten forgets to take their own bread, they cannot participate with the others. Then communion isn't really communion.
Last week, for the first time, our church offered 'glutten free' wafers for communion. We knew of one person who would use the wafer due to an allergy.
A few things to remember. Each wafer needs to each be placed in a little 'zip lock' baggie, due to the allergy. It cannot touch the bread on the plate. You will need to be careful during the 'prep' time of the sacrements too.
The glutten free wafers were quite expensive, so the little baggies came in handy for keeping the unused wafers for our next communion.
Yes, why not a deaf pastor with the interpreter speaking the words for a hearing audience. Wouldn't that be great?!
Thanks Mark for sharing this. I can only imagine what it must be like to have our deaf brothers and sisters sing alongside us in a regular worship service! Come to think of it, why don't we have more deaf pastors around? It's probably just as easy for a signing translator to translate his signs into words for the rest of us!
The passion they have is heartwarming. Since this is the first time for most of them to discuss these issues, I can see why the passion is there.
I haven't heard that one, but it sounds wise to me. I wish I could remember to do the same.
C.S. Lewis once said something like if you could see the person in front of you as God sees him through Christ, you would be tempted to fall on your knees and worship that person.
I wish I could remember that when I'm tempted to dismiss someone based on appearance or ability.
Nice one. Loved the graphic, although it confused me at first because Mr. Guillebeau uses "hustler" as a positive term meaning simply someone who combines work and talk well. I think of the word "hustler" as another name for a "con man."
What can I say except "BRAVO."
Here's a blog with a great visual about combining "talk" and "action." Thanks for inspiring people to do both!
I heard an exciting story on NPR yesterday about how the ADA has influenced architecture. The dean of the college of Architecture and Urban Planning for the University of Michigan was talking about universal design. Universal design principles take into account all the different ages of life and the differences in people's abilities. Universal design aims at creating spaces where everyone can live and move comfortably. Check out the story here: http://www.npr.org/templates/story/story.php?storyId=128778558
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.