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PMLD - what would you want from a church?

justmejustme Member Posts: 6 Listener
edited March 2019 in Learning difficulties

Hello,

I am new here, just a little background info on myself. I am a 28 year old living with a life limiting neuromuscular disorder and complex medical needs. I live with my husband who also has severe physical disabilities (Duchenne Muscular Dystrophy) We are supported to live an independent life by a fantastic team of personal assistants, funded by a NHS personal health budget.
We work together as disability advocates and are passionate about helping all people with disabilities live as independently as possible and to live purposeful, meaningful lives, with as much choice and control as possible, whatever their disability. Our recent focus has been on working with the NHS to improve access to personal health budgets for people with complex needs (if you would like more info on this I’d be happy to start a separate thread/ private message)

However, we are in the very early stages of embarking on a new project and would like some advice. We both have a Christian faith and our church has a keenness to better meet the needs of people with disabilities in our community (Nottingham City). I have to be honest. I have very little knowledge/ experience of people with PMLD. However, I believe they are the most excluded group of disabled individuals within our community and I have a deep desire to do something about this. This is by no means out of pity. The very opposite in fact. Through my own experience of physical disability (and having a brother with autism) I have come to believe in the power of inclusion. I believe not only do those with PMLD have a fundamental right to be involved in every aspect of mainstream society, but also that people have the most to learn from those who are most different from them.

I am not sure exactly what kind of service we are proposing to provide at this point. That’s where you come in. At the most basic level we just want to make church accessible to PMLD families, whether they are religious or not. You don’t need to believe in God to be loved and welcomed as part of our church family. I am by no means wanting to impose religion on anyone, but at the same time I believe those with PMLD should have equal opportunities to explore spirituality in a way that makes sense to them.

So some questions:

  1. Have you had any previous experiences of churches/ other religious groups? Good/ bad? How could it be made better?
  2. What are the general barriers you face when attending social groups?
  3. If one thing could be done to make you feel more welcome what would it be?
  4. What’s the most important thing you would like everyone to understand about your loved one with PMLD?
  5. What do you think ‘exploring spirituality’ would look like for someone with PMLD?
  6. Ultimately, as well as accepting people into our church community, we want to create a space (probably a midweek group) where those with PMLD can come and be accepted, loved and make friends, and have their own experience of church. It’s about meeting their needs. As I said before, I am currently uneducated in the needs of people with PMLD. What would you/ your loved one with PMLD want/ need from such a service/ space? What kind of activities? How long? Environmental considerations? Equipment needed? Stimulation levels? etc

I would be so appreciative of any feedback and advice, however brief or detailed.
Many Thanks in advance
Charlotte slight_smile


Replies

  • Sam_ScopeSam_Scope Member Posts: 7,732 Disability Gamechanger
  • SnowbelleSnowbelle Member Posts: 38 Courageous
    Hi Charlotte,
    Great project.  What does PMLD stand for? (Sorry it's probably really obvious to most people).
    I have a physical disability & have been mostly housebound & unable to get to church for the last 6 months.  I'm guessing I'm not PMLD so I'll just give you a quick summary instead of answering each question.  

    Things that I've really appreciated are churches which live-stream their services online.  It's helped me feel I can still be part of a service as it's happening from my bed. 
    My own church doesn't live-stream, but uploads it's sermons as podcasts each week.  They now upload it on the day rather than 2 days later which is also great.  However, I really miss the worship & sense of being part of the church family through missing the announcements & time where people might share things on their heart. (So it would be great if more churches considered including those parts of the service in their recordings where possible - could be separate to the sermon recording).  Or even having a few volunteers who would be in charge of mobile phones that you could ring put your phone on mute, and the phone at church on loudspeaker & if you had enough free phone minutes you could listen live that way.

    I found it very hard to find churches that stream their services live online.  There was a great website which had links to all the Catholic churches, but I couldn't find one for non-denominational or protestant churches.  A hub like that is really useful.
    I also really miss the opportunity to get prayer ministry (especially when my health condition is worse).  One of the churches I've found to livestream online has an email link to email prayer requests & when I emailed they offered to phone & pray with me (www.audaciouschurch.com) and there's a church in America which offer call back skype healing prayer once-twice a week (http://bethelredding.com/content/healing-rooms).  It would be great if remote prayer ministry for people who can't get out could be more available. 

    When I have been able to get to church but struggled due to my disability, considerations are: volume level, lift access, being able to put my feet up (a folding reclining sunlounger would be ideal!), being able to get water easily (sometimes get very dizzy), having somewhere to lie down if needed, offers of lifts, length of service (quite a few times I've gone for either worship or sermon but can't manage both).
    Being able to skype into small groups is also really helpful - I've done it a few times due to health, and no in previous groups I've been in parents of kids who had to stay at home also found that helpful.   

    Ways of making other events accessible to those who can't get out: e.g. during a week of prayer: could take part from home if someone could take photos of stations in the prayer room & email/message them to you.  Or by phoning/skyping in to a time of worship & intercession before outreach, or a prayer meeting, or the AGM etc. 

    I know lots of adjustments are dependent on finance & volunteers, so they're just suggestions of things which could be really helpful if possible, rather than expectations.

    Hope you can use that somehow even if I'm not in your target group.
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