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How can houses of worship accommodate your needs?

Discussion in 'Spirituality and ME/CFS' started by RebeccaRe, Jan 23, 2018.

  1. RebeccaRe

    RebeccaRe Moose Enthusiast

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    Hi all,

    I work with people who have disabilities in the Jewish community, and recently I have also been working with synagogues in my area who have become interested in being more inclusive spaces. This is a bit of an irony, since I have not really been able to attend synagogue since becoming sick (too much sitting up).

    One point I often make in presenting to synagogues is that people with disabilities are a very diverse group--not just people using wheelchairs or kids with autism--and that many people have invisible disabilities. And I try to give them simple, concrete tips for how to accommodate people with various needs (use unscented soap in the bathrooms, provide page magnifiers, provide schedules, etc.)

    However, I have been trying to think of ways that synagogues could accommodate me, but the only thing I can think of is turning off the air conditioning and sticking a recliner in the back row! Not quite so simple or realistic. I want to be able to include something about CFS in my presentations, so I need some help brainstorming!

    My questions to you are:
    • What would help you be able attend religious services?
    • What would make you fell more comfortable (physically or emotionally) at religious services?
    • What can houses of worship do to help you feel like part of the community, even if you can't attend services regularly?
    Thanks in advance for your thoughts!
     
  2. Countrygirl

    Countrygirl Senior Member

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    Unfortunately, being with any crowd of people is very ME-unfriendly, and there is little we can do about the sensory overload that it creates; however, the most useful aid for someone with ME is something like a garden lounger placed in a quiet corner.........and if possible near a door so it is possible to make a quick exit if necessary without disturbing others.
     
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  3. BeautifulDay

    BeautifulDay Senior Member

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    I like the rocking chair idea.

    Short sermons for ADHD. Sermons live streamed on web when we don't get out of the house. Pastor/usher brings communion to those who can't stand in long communion line.
     
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  4. Runner5

    Runner5 Senior Member

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    My old church put everything online, but it wasn't quite the same. I missed seeing everyone. It was just too far to drive and keep up enough oomph to sit there and drive home. Heard they have a new pator now and everything has changed.
     
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  5. JeanneD

    JeanneD Senior Member

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    I agree with this. Many seriously ill people cannot comfortably sit upright for long periods of time. Nevertheless, they would still like to be around people and/or attend services. A terminally ill cancer patient might love to attend services in their last few weeks, but not feel able to sit in a pew (or whatever) for the entire service. How nice if there was a quiet corner, preferably near a secondary exit, with a couple of recliners or even cots! Of course ME patients and many other people with disabilities would appreciate such an option as well. The trick, I think, would be to either put the area a bit out of sight, have a reservation system, or assign an usher who can direct those who just want to put their feet up and snooze during the service back to the main area. ;)

    The same is true for any social events at the house of worship... or any social event for that matter. We may be too sick to participate fully, but we haven't disappeared. Sometimes just seeing friends and family, listening to a bit of what's going on with people, and basking in the warmth of the event is enough. That we are seen reminds both us and our friends and family that we haven't disappeared.

    A place of worship could also publish information for the congregation like "How to Talk to a Sick Person" (which I have bookmarked somewhere but can't find atm), and guidance about how to help a sick person or someone with disabilities without making a spectacle, being domineering or patronizing, or wearing them out.

    I have heard that a number of disabled and/or sick people don't go out as much as they'd like simply because they're tired of being a spectacle -- a disability or disease instead of a person. Most people with disabilities develop a thick skin, but it's still exhausting to always be the cheerful and understanding ambassador for the disabled. Sometimes you just want to be you. A place of worship should be a place where that is possible.

    A house of worship with some people trained to quietly help where needed, and who can gently run interference between the disabled and the possibly well-meaning but socially inept would be a blessing to many disabled people. Sometimes just being allowed to be a person first and foremost is a happy experience.
     
  6. char47

    char47 Senior Member

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    I do just that. I am only well enough to attend maybe once every 8wks. And i take my garden lounger with me. My friend takes it in & sets it up for me while i wait in the car, & a couple minutes before the service starts they come & get me out of the car. I too ill to drive or anything & definitely too ill to be in a room with a crowd of everyone talking pre service, so i lie in the car until its time for everyone to shut up & listen & leave immediately afterwards. I actually have to position the recliner in the front row because i cant tolerate the extra sensory stimulus of latecomers coming in & children fussing that tends to happen at the back.

    It does make me a spectacle sitting at the front & i do find people's stupid comments tiresome "ooo that looks comfy we'll all want to sit in one of those", but i find replies such as "well i'll swap my recliner for your ability to sit up in a proper chair in a heartbeat, you can have my recliner with pleasure if you'll take the disease that makes me need it as well", tends to shut them up.
    But actually i find most people just stare with curiosity & bemusement. But the fact that the front row is filled with the pastor & leaders who know me & why i need it, does give me a fair amount of cover & their not batting an eyelid does set a good example which i think prevents more comments/questions. The ear defenders do make people stare too :)

    Having said all that i have often taken ill during the service & had to be taken out of the firedoor exit which is in full view, & have vomited on the way out trying to walk with legs not behaving, which is embarrassing, but does have the advantage of letting people see that i am actually ILL.

    this is a good project you're doing @RebeccaRe good luck with it.
     
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  7. RebeccaRe

    RebeccaRe Moose Enthusiast

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    Thank you all for your responses! These are very interesting--I came into this thinking that houses of worship allowing people to recline during services was going a bit too far, and that it wasn't realistic. It still may not be realistic for all places, but I'm thrilled that @char47 has done it with some success! Perhaps this is something houses of worship should think about!

    Would it make a difference if there was some kind of program where a person could drive you, or would simply sitting up in the car be too much when combined with sitting up in services?

    @JeanneD , let me know if you ever find that again! Part of what I do involves teaching ushers how to interact with people who have different kinds of disabilities, and also educating congregants. I'm always on the prowl for good materials!

    Many of you have mentioned sensory issues. Are there any things that your houses of worship could do to help minimize those? I often advise them to provide earplugs, be aware of the type of lighting used (such as flickery fluorescents) as well as the harshness of the lighting, meet in carpeted areas to muffle sound, provide 'quiet rooms' people can go to if they need a sensory break, etc. I would love to hear if you have any other ideas that might be helpful.
     
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  8. Mel9

    Mel9 Senior Member

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    If not a lounge chair, a high foot rest so legs are horizontal
     
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  9. Countrygirl

    Countrygirl Senior Member

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    It is important for the head to be able to lie back though so an upright chair would not be suitable. I don't think you can beat a sun lounger.
     
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  10. char47

    char47 Senior Member

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    Absolutely. The one i use is a folding metal one with a thick detachable cushion/mattress. - So it supports the head & neck & you can have the legs up or down. It has to be completely supportive & i mean this in the sense that it needs to allow the body to completely slump & not require any muscle to support any part of the body. - Well people have absolutely no idea what this really means, as for them a chair which is comfy/gives back support feels relaxing, but if you have to hold any part of yourself in position at all it's no good, & a healthy person wont be at all aware of the small muscle movements it takes to, eg hold one's legs on a foot stool.

    I use one like this
    https://www.amazon.co.uk/Garden-Sun...ors&ie=UTF8&qid=1516897593&sr=1-28-spons&th=1

    The back does down almost to flat when necessary too. Its good because it's portable & i can sit in semi reclining position with legs up or laying down almost flat.
     
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  11. JeanneD

    JeanneD Senior Member

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    I haven't found the one I had, but when I googled "How to talk to a sick" I got a lot of hits. They may not all be good, but it would probably be possible to cobble together the best ideas into a useful handout for the ushers. :)
     

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