How can houses of worship accommodate your needs?

[Rebeccare]

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!

 

[Countrygirl]

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.

 

[BeautifulDay]

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.

 

[Runner5]

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.

 

[JeanneD]

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.

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.

 

[char47]

sticking a recliner in the back row!

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.

 

[Rebeccare]

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!

It was just too far to drive and keep up enough oomph to sit there and drive home.

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?

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.

@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.

 

[Mel9]

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.

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

 

[Countrygirl]

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

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.

 

[char47]

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.

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.

 

[JeanneD]

@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!

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.

 

[Anchoress]

I used to find a corner at the back, or stay in the foyer, or even outside. Meet folk at the end of mass. Never expected folk to cater for me ..... At the back I met mothers with small children, a man with a dog, a man in high vis who was on his way to work and needed to leave immediately after communion.

Then i transferred to internet services.

 

[Hope4]

My list is long.

No amplified sound or PA system.
No fragrances in building, bathrooms, cleaning supplies, staff or congregation.
Just hardwood pews or metal chairs.

No padding or upholstery. (or those in a section for those who need padding, far away from those who need to be away from dust, and things which attract positive ions.)

No LEDs, flourescent or halogen lights. Just windows, skylights, and real incandescent bulbs.

No room dividers such as one finds in a modern office building.

Only acoustical instruments, and voices. No amplification.

No screen, slide show, videos, or special sound effects.

No candles. No incense.



No jangling jewelry allowed.

Cell phones and pages must be turned off. Not just on silent.

Perhaps EMF and VOC meters at the entrances to screen those who have forgotten to turn off electronic devices, and who wear poisonous chemicals. (As in: do you have the right to poison your neighbor?)

No moldy books. (Mold meters could be used to weed out the books that are going musty.)

No books, papers, leaflets, tracts, etc., that are printed or bound with poisonous chemicals. (Again, the chemical outgassing can be measured with meters.)

The service, as well as the prelude and postlude time need to be quiet and dignified. No social hour in the sanctuary. Have that in the fellowship hall.

------

Many years ago, when I was in another country, I would go to a convent for some of their prayer times. It was lovely. Wooden benches, stone building, clear structure of service. The sisters and the visitors all sang in Gregorian chant. It was short and to the point and nice.

A couple of times a year I will visit a church, only to find I have to leave due to airborne chemicals.

I sometimes visit a fellowship of a church for people who are deaf. They ask that people not wear fragrances. It is friendly and has enough structure to be calm, and enough flexibility to be warm and inviting. I don't go to the service which turns out the main light and has everyone looking at a screen for slides.

I can't go very often because it is still too much input all at once. And my ASL isn't very good, so it requires much effort to follow along.

It would be a great help to meet with others to pray, to worship together. I keep looking for a non-poisonous, quiet, clean place with others who care about such things.

 

[brenda]

I have heard of a church in America that bans people from wearing scents etc for the chemically sensitive. Otherwise I would say relay the service to another room for the very sick.

I would not need to bother going to church with all the bother it is, if people ever visited me or invited me to theirs.

 

[Rebeccare]

@Hope4 @brenda

One of the things I have added to my presentation are some things houses of worship can do for congregants who, in spite of the congregation's best efforts to include them, simply will not be able to come to services: people who are elderly, people who are immunosuppressed, people with certain types of anxiety, people with chronic fatigue, people with multiple chemical sensitivities, etc. And the challenge we present is: how can we keep these 'invisible' congregants engaged and feeling connected to the community?

One possible solution is live-streaming services, and posting videos of the live-streamed services afterwards so people can watch from the comfort of their homes and beds. This is a bit of a challenge in the Jewish community, since many synagogues forbid the use of electronic devices on Saturdays, but some synagogues are more lenient. But that still doesn't help those who really want to pray in a community, surrounded by other (fragrance free) people.

Another solution is organizing home visits through a Caring Committee. This would involve really reaching out to people who may want visits, and ensuring that congregants know that they can reach out to the committee and request visits, either one-off visits or regular visits, for any reason (no physical or mental health condition to small!). In some cases, the Caring Committee might organize small prayer services at the person's house every so often, but that can only work either in a large congregation where there are a lot of members that can be asked, or a congregation where the members are very engaged.

 

[brenda]

I know for me, I don't really want organised home visits - I want a friend. That seems to be too much for churches today.

 

[Hope4]

@Hope4 @brenda

One of the things I have added to my presentation are some things houses of worship can do for congregants who, in spite of the congregation's best efforts to include them, simply will not be able to come to services: people who are elderly, people who are immunosuppressed, people with certain types of anxiety, people with chronic fatigue, people with multiple chemical sensitivities, etc. And the challenge we present is: how can we keep these 'invisible' congregants engaged and feeling connected to the community?

One possible solution is live-streaming services, and posting videos of the live-streamed services afterwards so people can watch from the comfort of their homes and beds. This is a bit of a challenge in the Jewish community, since many synagogues forbid the use of electronic devices on Saturdays, but some synagogues are more lenient. But that still doesn't help those who really want to pray in a community, surrounded by other (fragrance free) people.

Another solution is organizing home visits through a Caring Committee. This would involve really reaching out to people who may want visits, and ensuring that congregants know that they can reach out to the committee and request visits, either one-off visits or regular visits, for any reason (no physical or mental health condition to small!). In some cases, the Caring Committee might organize small prayer services at the person's house every so often, but that can only work either in a large congregation where there are a lot of members that can be asked, or a congregation where the members are very engaged.

Rebecca, how kind of you to be working on this.

I don't want visitors, as they bring chemical poisons, and who knows what with them. The only suitable visitor is someone who keeps the MCS protocols for non-contamination, and very, very few people live this way. And visitors are exhausting, in any case.

Streaming might be useful, but I can't watch or listen very long. Depends on the way the voices are produced (is in voice technique skills), the person's level of mindfulness and compassion, the sound quality of electronic recording and transmission, and many other things.

Thank you for staying at it, even if some of us don't give you very many answers of "yes".

 

[Rebeccare]

Thank you for staying at it, even if some of us don't give you very many answers of "yes".

It's important to always keep on problem solving!

 

[Mel9]

Sitting up for hours is impossible for many of us. I would need a recliner chair to get my feet up off the ground.

 

[Gingergrrl]

Another thing I would add (and it might be there but I missed it) is that every single part of accessing the building, sanctuary, bathrooms, etc, is wheelchair accessible. Even though I no longer use a wheelchair, I did for 3.5 years and the number of places that are inaccessible is quite shocking!