Hoping in a system that lets you down

It's 'International Day of Disabled Persons' We're also still in the aftermath of the second reading of the assisted dying bill and the following vote. I've used just a small part of my own story to talk about why there is a high possibility of a slippery slope - and then question what that might look like on a future 'Day of Disabled Persons'....

10 years old and hoping for another 10

A series of posts from parents of children with additional needs.

What is it, why this logo and what can we learn from it?

I retweeted something the other day – it was about a phrase that is often said to me: “I’d rather be dead”. What they are saying is; my disability is so awful they just can’t see how life could be worth living with one. It seems to be the prevailing thought and it couldn’t be further from the truth. Having been a nurse, I do like watching medical documentaries, and as such I can see why we move heaven and earth to prevent permanent disability. We do all we can to save all we can. But phrases from relatives make it clear that the worst catastrophe in the world would be for their loved one to have a permanent disability and that their loved one wouldn’t want to be kept alive if they were going to be disabled. A few others will say they would rather have their loved one alive and deal with any disability there may be…..sometimes this is couched with “I hope they will forgive me”. I know I’m making a judgement on an ‘in the moment’ comment here, but look wider and into many Hollywood themes around disability being the worst thing ever – the only time it’s a happy ending is if the person walks again, completely recovers…..or even dies – so the suffering is over. I actually like the way the NCIS tv franchise works – disabled people are cast just because there are disabled people doing those jobs in real life. They are not there to make a comment about disability, they are just there, one of the team and their disability is not the main focus. It’s the same in a couple of English tv programmes too, but this way of working is quite rare. **Trigger Warning – abortion** [just the next paragraph] When we look at elective abortion – the rules around this being allowed to happen up to 40 weeks are written in terms of a child’s disability being ‘incompatible with life’ – and I’m not disputing that here. I’m asking why parents are pushed towards elective termination, even at the point of being in labour, if their child has a survivable disability or disfigurement. Is it because so many medical people also view things like Down syndrome, cleft lip/palate, clubbed feet etc as incompatible with life? Many healthy disabled people are routinely asked when in hospital if they have signed a ‘Do Not Resuscitate’ form. Why? Non disabled people are not routinely asked that? This is why many disabled people fear euthanasia being allowed in the UK – especially if the rules are as liberal as they are in Canada. Where is the value of life? And why do people rarely value disabled lives? These views may not be spoken of in this way by Christians, but the implications are still there. It’s in how we speak about a child born with disabilities, how we respond to someone who has become disabled and how we couch everything in terms of fixing people. As I’m always saying, if our first contact with a disabled person outside of ‘The Church’ is “can I pray for your healing” what does that say about how the church views disability? We sometimes find disabled people ‘inspirational’ because they get on with life – they go shopping, cross roads and even go the the toilet alone. (Just like anyone else!) But seeing someone with a disability doing normal everyday stuff, for some reason, makes us feel better about our own lives. If all we can see about disability is the awful prospect of having one ourselves, then something is wrong. Like many others out there in the world, we in ‘The Church’ worship the idols of perfection, normalcy and what we call ‘ability’. If someone’s body doesn’t comply with that, then that’s their problem (and they need to be fixed). Our churches use ‘normal people’ – as worship leaders, as pastoral leaders and speakers. We roll out a disabled person when we want them to say something on the subject of disability or to inspire and make us feel better about ourselves. And yet, many with disabilities can’t access discipleship, leadership training, or even just normal Sunday worship. When access to any area of church life is an issue, we tend towards seeing the disabled person as the problem. Not the inaccessibility of what we do. Isn’t all this reflecting the thought “I’d rather be dead”?  Should we instead be saying saying “This is my brother/sister in Christ – it’s obvious I should treat them the same? Why would I want them another way?”

[Note: I write the following from a deep love and respect for the Evangelical corner of the church. Out of that respect, I want the best for the churches, the leaders and those who attend. My sending church is an Evangelical Free church and I love it – deeply. They are family. In this blog I am talking generally, I’m not talking specifically about my own church.] There was a great article in a recent publication of Evangelicals Now (EN), written by Glen Scrivener. It was titled “Evangelical Futures: BWWS – The ‘Blokes Worth Watching’ Conveyor Belt”. (You can find it here – but it’s behind a paywall. Sign up for a free trial to see it) In it he uses analogies from a book called ‘The Trellis and the Vine’, where the writers give an image of the supporting structures (the trellis) surrounding the organic growth of God’s people (the vine). The article is is raw and honest, and I’ve taken that as permission to be raw and honest myself! I would normally be kind and gentle in how I work with people, so I apologise if this is not my normal gentle self. Glen in his article tells us that the ‘trellis’ is broken. I would go further and say it’s inaccessible too. I say this from personal experience and from seeing the disappointment and hurt of others. In the orthodox evangelical world, disability in any form will often get you chucked out of the BWW club or it will bar you from even entering it. When I’ve asked leaders if they also mentor disabled young people and those with additional needs the answer is clear: No. I’m a woman with disabilities, working in an evangelical ministry environment. I’ve been ignored in meetings only to have a man say the same thing and be applauded for their amazing idea. I’ve had the same thing happen because I’m disabled. I’ve had ‘able-splaining’ about things I am highly qualified to talk about and train/lecture in. (Able-splaining is a bit like mansplaining; A non disabled person explaining disability issues to a disabled person who “couldn’t possibly understand the complexity”….even though they actually know more!) I talk about issues of disability in the world of evangelicalism and I either get blank looks, thanks with no action, or ‘able-splained’ as to why I am wrong. There are rare exceptions, and I mean rare. If you’ve come to this blog and looked at the ‘about me’ page, you will see that I am a visually impaired wheelchair user working full time in the area of ministry alongside and with those who have disabilities or additional needs. I do consultancy and training and also lobby different groups about disabled people and those with additional needs being welcomed, discipled and mentored like any other person in the church. (Something I was doing BEFORE I became disabled myself – so this is not about me!) I also try to raise awareness as to what life is like out in the real world if you are disabled in any way. But I’m hitting a brick wall in many places. I’m also finding many gate keepers would could make a huge difference, but they don’t see it. Disabled people remain mainly unseen. With the work I do alongside families, the majority of complaints I get from them are about Evangelical churches, including being asked to leave their church for a variety of reasons – none of them valid. If I go to meetings about evangelism and mission, aside from the fact they are rarely accessible and organisers are happy to leave me at the back unable to join in with anything, disability is never on the agenda – we are not even worth evangelising . I’m told that they/we will naturally be included as part of the community…..but they/we are not, because we make what we do inaccessible for many. Using disabled people in outreach and on the planning groups is also something that is rare. We have to be intentional and proactive in all these areas. It won’t ‘just happen’. I once offered to do some free consultancy for an evangelical networking organisation – instead, they hired a non disabled man that knew nothing about the subject who kept ringing me for advice to feed back to the leadership. I could tell so many more stories! In the last couple of years I have found out that something else will always be more important and there will never be time to have this subject on an agenda. On the whole, we are seen as weak, powerless, a tragedy, not worth mentoring and disability is certainly not seen as worth having a bible study about. I am in my ministry because I became disabled later on. If I had been disabled at the point of feeling called to work as a children’s evangelist (with a very specific call to children with additional needs and disabilities), I wouldn’t be where I am today. Even if there was such a thing as women worth watching – disability would preclude me from it. I will never been seen as anything more than the person that moans about how ‘The Church’ does disability – even though I have many other gifts… I love my evangelical corner of the church, but I ache for those with disabilities and additional needs. I’m sad that the churches are missing out on such a huge blessing by not using their gifts, or maybe – not even seeing them as God’s perfect creation. I have the best job in the world – but a lot of the time it sucks.  It’s also a job that should not have to exist.

Imagine being in a room where there’s about to be a meeting with lots of people attending. Some are already there, and others arriving. Now imagine people walking in, seeing you there, then stopping – swaying due to the sudden stop, and then suddenly doing a tight turn to walk in a different direction away from you. Imagine the same thing at meal times, or a panicked look if you go anywhere near the table they are seated at. I get this a lot, and I mean A LOT. But there are also people who will chat, sit with me, grab a cuppa and occasionally ask about my current knitting or crochet projects. I go to lots of meeting because of my ministry work and find that in those meetings people generally split into four categories: Those who know me and accept the physical changes I’ve gone through over the years. Those who don’t really know me, but don’t let my differences get in the way. Those who have known me in the past, but struggle with the changes I’ve gone through. Those who don’t know me at all, spot a wheelchair and make assumptions. Guess which ones stop and chat and which ones try to ignore my presence. Guess which ones blank me when I smile across the room. And guess how I feel when someone I knew ‘pre-wheelchair’ looks at me in utter horror and walks the other way. I’ve asked other wheelchair users if they get the same thing and they do, so it’s not just me. It hurts them too. What on earth is so horrific about using a wheelchair? Some struggle with it due to their theological beliefs. For some, I don’t fit neatly into their concept of ‘what a leader should look like’. I also mess plans up due the wheelchair and my visual impairment – it makes simple arrangements complicated because of the access I need: The building the meeting is in needs to be accessible with accessible facilities. I can’t get on a platform to speak (actually I can, but…’assumptions’…which means I’m rarely asked). When attendees are asked to come to the front to do something or respond, I can’t because of all the tables/chairs/people in the way. I can’t even fetch my own drink or food most of the time. Yep, my wheelchair messes people’s plans up – big time! Some have never met a disabled person and just don’t know what to do. And apparently, 67% of brits are scared of talking to disabled people! (Scope research). It’s not rocket science! Just talk to us like you would anyone else. Smile, and don’t be scared. We are humans who just happen to use wheels.  For me – I won’t tell you off if you use the ‘wrong’ language, because I get it wrong too. And…… I don’t like tea! (Bring me coffee and I’ll be your friend for life!)

Poster is from Stickman Communications Image description: A4 Poster with paragliding stickman who is in a wheelchair. Text: Can’t exists…but I’m too busy with can to worry about it.