15 December 2018 | Bracknell, UK [Amy Ainsworth]
I am NOT exceptional, I am NOT more inspired, I am NOT stupid, NOR am I intellectually superior! In reality, I AM, just like you!
At the age of six, nearly seven, I was diagnosed as an epileptic* and, for the most part, I was excited. I felt like it made me unique, special. I had something no one else had and, like every other kid in the world, I believed I could do anything. I still do, to some degree, but social labels are powerful, so I learnt, at a very young age, to hide my feelings. To hide my diagnosis…
Spastic, stupid, moron, crazy, delusional, dumb or dim, retard, freak, insane, hysterical, idiot, mad or mental, defective, psycho, nuts, spaz, demon possessed, you’re not like us, why don’t you kill yourself!
As hard as it is to read, and as insulting as these words are, I have been called all these things many times and I still live with these insults. Social labels have an effect. If you are treated a certain way your whole life, you start to believe it.
Recently, I attended the sisterhood conference at Newbold College. The theme was “The beauty in brokenness!” This sisterhood is one of the calmest, inclusive, and comforting groups of people in the church and I look forward to the conference every year.
I was sitting, listening and thinking and it suddenly struck me! I am broken but I am not different. After that I decided to change my own thinking but also realized that I need to change everyone else’s as well. I thought, “I am no longer going to take these derogative words lying down.” At the same time, I recognised that this kind of behaviour comes from ignorance. The best way to change minds is to inform.
I do have a physical disability. Speaking plainly, I have brain damage. However, my brain functions, most of the time, just like everyone else’s. I also have diagnosed OCD, diagnosed depression, suffered postnatal depression following the birth of my daughters, (believed to be partly situational), and I live with increased susceptibility to depression. I do however find comfort and support in God!
And God is important! I grew up in the church. My father is a Pastor, as was his father and grandfather. You get the picture. On some occasions the church, and my friends there, have been my comfort. The same is true for friends I have spoken with who share other disabilities, come from other generations, other countries, and have their own unique perspectives. There is much that is good, but also some serious challenges. My conversations and experience have led me to compile a list of things that should change along with some that should remain the same or be expanded. Let me share first the good things the church has done for me and my friends!
THE GOOD 1) At church, in Pathfinders, at the church youth group, small groups, prayer groups, no one is an outcast! For most of my youth and teen years, I was bullied everywhere except church! I fully believe that, if the church and my friends had not accepted me, I would have ended my life. I will be forever grateful to my friends for their acceptance and support! I am grateful to the church for providing a safe place for discussion, communion, fun and friendship! These feelings are shared by a few of the people I have spoken to. Small groups and prayer groups appear to be a very good way to build a support system and to make friends. 2) Growing up in the church has provided vast opportunities for so many experiences! I have been to many places and seen many things that I never would have otherwise seen. I’ve been to camporees, shared mission in orphanages, dog pounds, old people’s homes, hospitals and much more across the world. Some for fun, some to help others. I’ve done some teaching and become a mentor. I’ve learnt some hard truths and some fun facts. I‘ve had both work experience, life experience and fun experiences and will be forever grateful! 3) I’ve had the opportunity to take part in youth services, sing in a choir, join and teach a mime group, be a youth leader and part of a worship team. I’ve learnt to do things despite the fear, despite self-doubt, insecurities, or worry of a backlash. That is partly why I am here writing. I have the courage to write this now. I am an introvert, but I have done public speaking. I am incredibly self-conscious, but I have pushed past that to achieve. I am disabled, but it hasn’t stopped me from doing anything I have wanted to do. All of this was made possible through church support and friendship! For that I will be forever thankful! 4) Encouragement from church members, for me, for pastors, for those with worries, those with health problems, etc. Such thoughtfulness is appreciated. Affirmations and positive words help! No matter how small. 5) The church pastor is also a very good back-up and is a good person to go to for help. They are also trained to know when to refer people to a doctor or other health professional**. And if the support can go further than that it is superb. One person said their pastor put aside time to try and help. Which is a fantastic way to support someone, just by giving them time. The same may also be true for church elders or other trusted leaders in the church. 6) The culture of openness to discussion has been helpful for forming and developing a belief or view of anything under discussion, e.g. God in relation to disability. There are people who have allowed for exploration, asking tough questions, and having difficult conversations about God and disability. Openness and an open-mindedness, can have a very positive effect on life and belief. THE BAD Sadly, not everything is positive. I’ve equally had very negative experiences within the church. If I didn’t have the friendship circle I have, I could very easily have left the church as a result. Mostly these do tend to be exhibited by a very small minority, a couple or by a single individual at a time. At their most basic, these situations fall into four main categories; 1) Behavioural Shift, 2) Identity defined by disability, 3) Fixation on cure, and 4) Insults. 1. Behavioural Shift A behavioural shift is when a person changes their behaviour in response to seeing or coming to know that someone has a disability. I understand that it’s human nature to make judgements. However, I believe that if you know the effects of your judgements you can modify your behaviour. There are four main behavioural shifts:
i. Becoming too nice. If it is genuine, it is fine. If it is because you know someone has a form of disability, it is not. ii. Act like they are stupid. Regardless of whether they have an invisible, visible, physical or mental illness, never, and I mean NEVER, assume someone is stupid. Chances are, their intelligence is perfectly normal. Don’t talk down to people, don’t talk to their friends/partner instead of them. Don’t ignore them. iii. Don’t feel like you must include someone because you feel sorry for them or from some misguided idea it is what you should do. The last thing they’ll want is pity. Only ask if they would like to be included if you think they will be a match. Don’t design programmes because you feel like they need to be included. Equally, don’t assume someone is a spokesperson for every disability. Be genuine, because we are human too! iv. On the flipside, don’t exclude someone because you think they will be incapable. You may be surprised. Ask yourself, ‘will they be interested?’ ‘Is it something they’d want to do?’ and, ‘Will it be enjoyable for them?’ You can ask them about their interests but don’t force it.
2. Identity Defined by Disability
There is more to us than just our disability! We have likes, dislikes, loves, loses, feelings etc. Just like everyone else. We have ambition, will-power, strength, etc. Just like everyone else. I have epilepsy, but it does not define my life. 3. Fixation on Cure Don’t assume we need fixing! There appears to be a belief that we must all strive for perfection. Strive for “normal”! There is no such thing. We are all imperfect, every one of us, including you! Including everyone! Striving for perfection or “normality” is not only impossible, but mentally and physically straining.
Not all of us believe we need healing. I think I gave up that belief when I was around seventeen when my epilepsy came back again after a short period of remission. I believe that I am here for something. Only God knows what, but having survived two memorable near-death experiences, many more that I don’t remember, and the ever-looming threat of death, including, at some points in the past, suicidal thoughts, it seems I’m not going anywhere yet. I don’t think of myself as broken. I think I am here to curate change and create change. I am okay as I am.
Genuine concern is fine, but we are not a circus, a goldfish or a science experiment. If you ask if we are okay, unless it is genuine our likely answer will be “I’m fine!”. On the flipside, don’t be scared to ask. We understand.
Don’t believe we are praying for healing! This is a difficult one, as for many this is what you would expect. However, it is an unhealthy frame of mind and it is highly likely we’ve accepted who we are. 4, Insults (The Ugly) Direct, indirect or accidental insults! This is linked to the previous point, that we are striving for healing. Don’t ask if we’ve tried being anointed, etc. If you’ve thought of it in the few minutes of conversation, chances are we have previously thought about it living our life with disability. Try to refrain from suggesting cures, miracles, potions, healers, diets, exercise, etc. After one serious seizure that left me hospitalised, I was offered almost 200 ‘cures’ by well-meaning people who had no understanding of the complexity of my condition.
Overt insults! This is the ugly bit and may be hard to read (fair warning). In my experience, pastors’ kid or not, I’ve been told I’m not spiritual enough, that I need to pray more. I’ve been told that my parents, or their parents must have done something bad for me to deserve this (and, lets be frank, I already said I’m okay with who I am and what I have). I’ve been told that I am being punished for something, or that I am demon possessed and they’ve crippled me, or that I should have stopped believing by now. I have had much more thrown at me by my own church, members and even pastors, than anyone should have to deal with.
Please refrain from preaching about assumptions. Preaching about illness/disability should have research to back it up. In my experience, I have had people preach about demon possession and then say something like “and now in modern society, we call it epilepsy!”. Can you imagine how that made me feel? Regardless how good the rest of the sermon was, I immediately switched off. Then I want to educate the pastor. I cannot be the only one affected this way. Please be understanding, sympathetic and conscious of the people in your congregation. If we can change just these four points then the church will become a far more welcoming place and could potentially help more people to become less ostracized, excluded, or demonized by society and the church. It is possible!
LIMITATIONS AND POSSIBILITIES
My challenge is to look at what I can do, not to live by limitation. It is true, I may not be able to drive a car, but it doesn’t stop me from getting where I need to go. No, I can’t do things spontaneously, but I have learnt to meticulously plan in case something changes, either good or bad. No, I can’t work in a normal office environment, but it doesn’t mean I don’t work. No, I can’t do a university degree, but I can and do still learn regardless. I have learnt to find ways around the issues. I have learnt to adapt! And yes, I do still believe in God, Just like you! So, an overview of both the positives and the negatives at church: Positives; things we should keep doing or encourage:
i. Church groups – Small groups, prayer groups, crafting groups, youth groups, pathfinders/adventurers, choirs, etc. ii. Experiences – Camporees, teaching, singing, oral recitation, helping the homeless, mentoring, etc. iii. Helping overcome boundaries – facing fears, self-doubt, etc. iv. Encouragement from church members, pastors or elders, etc. Someone to listen! v. An openness to discussion.
Negatives; things we need to work at:
i. Behavioural shifts – Monitor your reactions and don’t judge too quickly. ii. There is more to people than just their disability. iii. Don’t assume we need fixing. That might be the aim of some but not all. We may be fine as we are, or fixing is not an option. iv. And definitely no insults! Think about what you are saying before you let it come out.
I don’t believe that I am broken. I also don’t believe that I am whole. I am what I am, and I am okay with that! But the beauty in this “brokenness” is that I can, and do, strive to help others! The best way to help is to talk, to encourage, sympathise, and let them know this is normal and can happen to anybody at any time. Suggest small groups, or prayer groups and ask them to seek help if needed. It’s all about stepping up! Helping improve others’ lives as well as your own. And if you think you may need help, ask! Don’t be afraid. Let us be like children. Unafraid and excited for anything new!
[My special thanks to Espen Johnson, Anna Radosh and Victor Hubert for assistance with this article.]
*Epilepsy – There are many forms of epilepsy. Mine is pre-frontal or temporal and uncontrolled. This means there are many things that are not possible for me (like driving) and my seizures are uncontrolled. There are many other types, and no one suffers in the same way. **If under abuse or know about someone, please seek social services or a counselor.
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