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:
- Have you had any previous experiences of churches/ other religious groups? Good/ bad? How could it be made better?
- What are the general barriers you face when attending social groups?
- If one thing could be done to make you feel more welcome what would it be?
- What’s the most important thing you would like everyone to understand about your loved one with PMLD?
- What do you think ‘exploring spirituality’ would look like for someone with PMLD?
- 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 