Disability and Faith – part 3

Screen Shot 2018-05-08 at 17.32.26Living Life to the Fullest Co-Researcher Sally Whitney has had an article published in Roofbreaker, an online magazine from Christian disability charity, Through the Roof. The article, in which Sally makes sense of her disability and illness experiences through her faith, has been published over three editions. So far we have shared parts one and two; below we share the final part.

2 Corinthians 5:7 says For we live by faith, not by sight. And that’s what I had to believe. Surely the invisible Father that I believe loves me, is with me and is guiding my life? Sometimes, I physically craved Jesus – I wanted Him to sit on my bed and physically hold me. To hug me and tell me that from an eternal perspective, I was going to be fine. I practised mindfulness techniques where I would envisage the Holy spirit as a pink cloud-like entity and It would envelope me as I breathed it in (I’m not sure of how theologically correct that is?!).

But hope lives. Despite finding myself in a previously unimaginable situation, with incurable conditions, 24 hour care and life threatening symptoms, good things have come to pass. I applied for an assistance dog from Canine Partners and was matched with Ethan. A match so perfect that surely could only have been orchestrated by the creator of the Universe. Ethan has transformed my life and shown me that I no longer needed to reject the notion of my own disability. By accepting my illnesses and embracing my weaknesses, new realms of life have opened up to me. Ethan has brought me so much joy, so much colour to my life that I have an incredibly hard time imagining my world without him. And I would never have met him, been given him, if my life had not taken the course it has. Ethan’s unconditional love for me doesn’t see my illnesses, my weakness, my flaws, but only me, Sally. In it I was faced with an unbalanced mirror. In my eyes, the reflection of myself was still of someone who was worthless. I had cripplingly low self-esteem, carved from the punitive treatment and disbelief I had received in hospital.

Yet I was aware that those views were not of God. I know biblically that God values me. I am of worth to Jesus. Dare I believe that I could be of worth to someone else? After pruning, when spring and summer come, there is an abundance of fruit. The sharp pruning knife will, in the end, bring fruitfulness and blessing.

Then I met my husband Ed. And the amazing thing is that it was both of us being totally vulnerable and being courageous enough to open up about our individual weaknesses, that brought us together. My grace is sufficient for you, for my power is made perfect in weakness. Made perfect! As I admitted my frailty and my brokenness, I told my journey of surrender. In turn, he exposed his own vulnerability by telling his tale of losing his old self and giving it all up to Christ. The power in that admission was what ultimately won me over. And remarkably he was not put off by my failing body or irregular lifestyle. His birthday fell between our 2nd and 3rd date and I had texted in the morning with a celebratory message – (I may have actually sent a few celebratory messages and sung down the phone!) However, then he stopped hearing from me and couldn’t make contact. I had been rushed into intensive care again after another respiratory arrest and was in a coma, intubated. I thought that was enough to put anyone off. But he drove over to see me after I had been discharged and chatted to me as I lay in a hospital gown in bed recovering. How could this be? This was another example of what it is to be truly loved despite my flaws. If Ethan and then Ed could see past all my problems and still see someone who was deserving of love then surely I was seeing a minute reflection of the love God Himself felt for me?

Ed and I got married 14 months later. It was a time of great celebration. An event that I never considered possible. A milestone in my life that I believed I would never reach. A far-reaching prayer that had been answered. It was a celebration of love but more than that an illustration of the things that can happen in life when you allow God to guide you, take His lead and follow Him.

In their hearts humans plan their course, but the Lord establishes their steps.– Proverbs 16:9 (NIV)  And now I arrive at a place where, for one, I am still breathing, but secondly I want to live every moment I have left for Him. I do not know what my Future holds. I do not know how long my body will hold out. But I return to the verse that has been quoted at me so many times.

Jeremiah 29:11 “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future”. I have been steered so far away from my original plans and I have to admit it is very hard to see myself as anything but a burden. But dare I believe, if I walk the road with Jesus, perhaps “I” may have something to contribute? Could I minister to others? Having been passed like silver through the refining fires… Pushed to my very limit, road-tested inside and out, and taken to hell and back;

Could I use my desperate act of surrender to do God’s work?  ‘Finally he brought us to this well-watered place’ (Psalm 66.10–12, MSG).

If I have learned anything over the past 13 years it has been to find the joy in everything. To always hold onto hope and His promises. To love Jesus and all those I meet with sincere and deep love. I’ve learned better to walk beside the Lord and live with and for Him. John 15, 4-5 says the second secret of fruitfulness is closeness to Jesus (v.4). I cannot tackle my problems on my own. Jesus says, ‘When you’re joined with me and I with you … the harvest is sure to be abundant. Separated, you can’t produce a thing’ (v.5, MSG).

I can only overcome my battles when I am near to Him. I see my life bearing fruit as is written in the gospel and I continue to seek Him so my prayers will be answered (v.7), God will be glorified (v.8) and my joy will be complete (v.11). I do not believe my life will be easy from here onwards, I have not been healed and I am not sure where I am going or exactly what my purpose is, but I know this; He loves me and I love Him.

And I have HOPE. In my most testing moments, I return to Romans 5:3-5 over and over. We also glory in our sufferings, because we know that suffering produces perseverance, perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.

As someone who has experienced a huge depth of suffering the first part of the passage is the hardest to stomach and has taken the longest to make sense of; “We also GLORY in our sufferings”. But maybe it is better to approach it from the end. HOPE does not put us to shame because God’s love has been poured into our hearts. That is the greatest gift I could have been given. God’s love in my heart. And this never-ending hope that I have held tight to has come from somewhere. I truly believe it has been cultivated from pushing through, holding on as I suffer pain after pain, loss after loss. I have persevered. And if perseverance produces character and character produces hope and that leads to God’s love literally being poured into my heart, then perhaps, just perhaps, the suffering that has started this chain is something to glory in.

This isn’t just a story of suffering and pain. MY hope is that this is a story of encouragement to persevere, surrender and put your hope in Him.

Thinking about social justice through disability-as-opportunity: a dishuman approach

On 19th November, 2018, Professor Katherine Runswick-Cole (The School of Education, and iHuman, The University of Sheffield) delivered the keynote lecture for the Sheffield Hallam Education Studies Degree Annual Conference.

In the lecture, Katherine described the ways in which ‘learning disability’ has been constructed as a ‘nightmare’ for moral philosophy and social justice. Accounts of social justice premised on the notion of rational, able and bounded individuals have struggled to account for the lives of people with learning disabilities.

Drawing on work with colleagues, Katherine described an approach to social justice that centres the lives of people who attract the label of learning disability. She argued that this allows us to think more expansively about what it means to be human and what this means for social justice.

To learn more about this work, please visit here.

Image of some scales

Exploring Multiple Childhoods Workshop: Linkoping, Sweden

This year marks the 30th birthday of Tema Barn (Childhood Studies) at the University of Linkoping, Sweden. Tema Barn is an interdisciplinary research centre focused on children and childhoods that focuses on children’s perspectives and on child-orientated research methods.

As part of the birthday celebration, Professor Anna Sparrman and her team convened a multidisciplinary workshop to bring together a group of international academics to explore the multiplicities of children’s childhoods.

Professor Katherine Runswick-Cole (The School of Education and iHuman at The University of Sheffield) was invited to talk about “Ethic as Method”. Drawing on her work with colleagues Dr Kirsty Liddiard and Professor Dan Goodley and the Co-Researcher Collective, Katherine spoke about participatory research with children and young people as a form of relational ethics. She described the ways in which disabled children and young people have been excluded from research in the past. She talked about how the research team were learning together to understand the lives of children and young people with life limiting and life threatening impairments as part of an ongoing research project “Living Life to the Fullest: Life, Death, Disability and the Human” (funded by the Economic and Social Research Council).

Katherine said: “I feel very privileged to have spent time with a committed group of academics to think about how we can better understand children’s participation in their social worlds.”

To learn more about Katherine’s work, please see here.

Linkoping landscape

Linkoping, Sweden

 

 

Improving Transitions for Young People

Together for Short Lives logoLast week, our friends Together for Short Lives, the UK charity for children’s palliative care, announced eight new innovative projects that have received funding through its Improving Transitions for Young People Fund.

The Improving Transitions for Young People Fund is Together for Short Lives’ ground-breaking funding programme, seeking to address the cliff edge in care experienced by young adults in their transition from children’s to adult services.

One of the newly-funded projects, Talking about… sex and relationships: Young people speak out, has links with the Living Life to the Fullest project’s Lucy Watts MBE and Kirsty Liddiard. Lucy and Kirsty first began working  together as part of the Sexuality Alliance, a collaboration of Together for Short Lives and the Open University. The Sexuality Alliance developed ground-breaking sexuality guidance and standards for professionals who support young people with life-limiting conditions. You can find out more about the Sexuality Alliance here, or check out the Guidance and Standards here.

Skip forward a couple of years and the Talking about… sex and relationships: Young people speak out project, led by and for young people with The Open University Sexuality Alliance and Hospice UK, is designed to develop a range of Open Educational Resources (OERs) that will facilitate young people to have conversations about sex, intimacy and relationships with their family, carers or professional support staff. Our Living Life to the Fullest co-researcher Lucy Watts MBE has been the driving force behind the development of this project, along with Maddie Blackburn, an academic at the Open University. 

Excitingly, the project will also equip health practitioners to provide better support to young people on this invisible topic through knowledge, resources and a better understanding of the views and experiences of young people themselves. You can learn more about the Improving Transitions for Young People Fund here.

The Sexuality Alliance Guidance and Standards

The power of blogging

Carrie's website image

Our brilliant co-researcher, Carrie Aimes, has had her blog, Life on the Slow Lane, nominated for two categories in the UK Blog Awards.

Carrie is an artist, a blogger, and regular writer for Disability Horizons, Muscular Dystrophy Trailblazers and Limitless Travel. In Living Life to the Fullest, she is co-leading our arts strategy within the project.

In Life on the Slow Lane, Carrie shares her personal experiences as a young disabled woman living with a progressive condition – she offers advice, does great reviews and interviews and much more.

Upon hearing about her nomination, Carries said, “It [Life on the Slow Lane] has given me a purpose and a platform to raise awareness of a little-known genetic condition. It also enables me to offer advice & provide support & information to others in a similar position”.

All of us at Living Life to the Fullest would be so grateful if you could show your support for Carrie and vote for Life on the slow lane in the UK Blog Awards – all it takes is a couple of clicks:

To vote for Carrie in the Lifestyle Category, click here.

To vote for Carrie in the Arts and Culture Category, click here.

You can also follow Carrie on Twitter at @claimesuk

Picture of Carrie Aimes

Carrie Aimes

Disability and Faith – Part 2

A picture of a woman in a wheelchair (Sally) with her assistance dog, Ethan.

Sally Whitney, Co-Researcher, Living Life to the Fullest

Living Life to the Fullest Co-Researcher Sally Whitney has had an article published in Roofbreaker, an online magazine from Christian disability charity, Through the Roof. The article, in which Sally makes sense of her disability and illness experiences through her faith, has been published over three editions. Last month we published part one, below we share part two.

I was lost. Who was I if I wasn’t going to be a doctor? More than that, my preceding journey of ill health had taken so many twists and turns along the way that I almost didn’t notice that I had lost so much. And then… then it came to the surface. I had lost my identity. I didn’t recognise myself. I had lost friends along the way, I had lost my childhood boyfriend, I had lost a relationship with a close family member who couldn’t handle the intensity of my illness. I had lost my studies, my career, my way of serving the Lord. I had lost my physicality, I couldn’t carry out recreation or walk easily. I gained so much weight through medical treatment that I no longer recognised myself in the mirror. I didn’t even have the same wardrobe of Sally. Who was I? I later recognised that I was grieving for the Sally of my youth, her hopes and dreams- all of those had died. I couldn’t take it any longer and I broke down in a service at church. I was half crying because of the pain racking my body but then I was sobbing for another reason. I was so battered and bruised, so completely stripped of everything I knew, that I thought coming back from this point was impossible. I couldn’t humanly see how I could proceed. I had been pruned back so far that I was barely recognisable as a living thing. Jesus tells us of one of the secrets to Christian fruitfulness is pruning (John 15 vv.1–2). The purpose of pruning is so that you can bear even more fruit. Pain, sorrow, sickness and suffering, loss, bereavement, failure, disappointment and frustrated ambition are some of the ways your life is pruned. But pruning

makes way for new life.

I surrendered. Totally and completely. I lay down at the foot of the cross and gave the only thing I had left, my soul. Jesus was the only one who could take my shame, my loss, my pain, and pin it to the cross. He loved me and only He could take my brokenness and make it whole. I had been describing myself to my friends as a broken statue that had shattered into a million pieces. I could potentially be put back together but I would never be beautiful and flawless again. I was tainted. But that’s why I needed Jesus. It would be years late, here at St Peter’s, when I heard of the Japanese art form of ‘Kintsugi’- fixing broken pottery with gold paste-making the whole all the more unique and priceless. At the point of falling at Jesus’ feet, I didn’t feel beautiful, but I knew I needed him. I had the realisation that I wasn’t enough in my own right and only Jesus could take my weaknesses and make me strong.

I held fast to the verse in 2 Corinthians 12:9-11, “My grace is sufficient for you, for my power is made perfect in weakness. Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.” I placed a card with this verse on at the foot of my bed so every day I could try and convince myself that my weaknesses may one day be strength.

So there I was, broken and ill, getting new unexplainable symptoms every day but knowing that I needed new plans fixed in Jesus. Having given up on the medicine dream, I transferred to study cognitive science and started at Sussex university in 2011. I was determined that I could make this work and I would do it for the glory of God.

I put all my trust in God to make it work this time. It wasn’t easy, I was getting progressively weaker and many physical problems in all my major body systems would come up and weaken me further. My weekly trips to see specialists in London were exhausting and left me no time to study. More than that, my physical health meant socialising was becoming increasingly difficult. When I was able to attend church I felt surrounded by God’s love and felt him present in my life more than ever before.

I was diagnosed with Ehlers-Danlos syndrome and associated conditions in the Spring term of my first year and that meant a battery of new tests and treatments. I became unable to participate in anything and realised that God’s love and goodness was so much easier to access in community. I was faced with the problem of how I could be in community when my body was physically too weak to join in. I also came face to face with the realisation that my illnesses weren’t going away. This was for life. Although I was a unique child of the Father, I would always be broken and flawed. The realisation only came later that this is the case for everyone, regardless of whether their bodies worked or not.

After I successfully made it into the 2nd year I fell broken at the foot of the cross again. After losing all blood flow to my hands, turning them black, I had my most severe and life-changing seizure. In the frenzy of the resuscitation area of A&E, after hours of seizing, I stopped breathing and I had to be resuscitated. I was intubated, put on a ventilator and into an induced coma. I had had a respiratory arrest and a whole new battle lay in wait.

I was in intensive care for a very long time, having seizure after seizure, before I was moved to the National neurology hospital in London. The seizures were unbelievably painful as I would dislocate my joints as I writhed, contort into unbelievable yoga like positions with the soles of my feet meeting my head, and I was in a constant state of confusion due to the drugs. But this time, despite the seriousness of my situation, I coped better. I had Jesus. I had surrendered. Whatever happened, my hope was pinned on Him. I was put into an isolation room on the ward as I had contracted an infectious virus and so I had very little contact with anyone else. I was alone again. But when I was able, I would put on worship music on my phone and lie in the presence of God’s love. I must have listened to the Oceans album by Hillsong at least every day of my stay. And I experienced joy, yes, joy from revelling in his presence. I still had not lost hope. Psalm 67 verse 7-8 says; Because you are my help, I sing in the shadow of your wings. I cling to you; your right hand upholds me. And that’s what I did, I clung on. I clung on to him and I clung onto life. That’s what I continued to do after I was discharged. Once again, I had to learnt to sit up. Once again, I had to learn how to eat a meal without seizing. 5 years later I haven’t cracked learning to walk. My life had changed dramatically again. I was largely confined to a bed and then a wheelchair and I continued to have violent seizures. I also continued to have respiratory arrests. I have been in intensive care just under 10 times, yet each time I have pulled through and started breathing again after coming out of the coma. And I breathe in more than oxygen. I breathe in His life-giving spirit. My new situation of having carers with me 24/7 and risking respiratory arrest at any point was made easier by taking solace in the Bible. I took reading it as seriously as I did my physio exercises. I still do. He is where my help comes from.

And still questions plagued my mind: Could I return to society? Would life ever again contain the normal things that I desired? Would I ever be able to stop fighting this battle for life?

Imagining different futures with disabled young people

Imagine no one ever asking what your hopes, dreams, ambitions and fears are? Imagine being a twenty-four year old young woman and no one has asked you how you feel? Perhaps you can’t imagine.

But disabled young people with life-limiting and life-threatening impairments tell us that this is their lived experience. A focus on medical interventions and social care means that the young person’s feelings are lost. It is important, of course, to focus on the practicalities of young people’s lives, but sometimes this means that many of the aspects of what it means to live well are ignored.

Disabled young people tell us that they face the challenges of living with impairments but that their lives are limited by other people’s failure to see the person. They want people around them to understand that they have hopes, dreams and ambitions and that they can and do live full lives.

On 6th November, as part of the Economic and Social Science Festival in Sheffield, The School of Education and iHuman Sheffield hosted an event at which Sally Whitney and Emma Vogelmann spoke about their experiences disabled young researchers. They are part of a co-researcher collective at the University of Sheffield which is exploring the lives of young people with life-limiting and life-threatening impairments as part of an Economic and Social Research Council funded project Living Life to the Fullest: life, death, disability and the Human. Working with Katy Evans, Lucy Watts MBE, Carrie Aimes, and Ruth Spurr, Emma and Sally have been involved in research design, interviews and analysis and are co-authors of a peer-reviewed article for the academic journal Children & Society, alongside the university researchers Dr Kirsty Liddiard, Professor Dan Goodley and Professor Katherine Runswick-Cole.

The researchers made a short film screened at the event that describes what being involved in research means to them. You can watch the film here.

Sally and Katherine appeared on BBC Radio Sheffield after the event to talk about the discussion we had. You can listen here.

We would like to thank the co-researchers and everyone who came to the event and made such wonderful contributions to the discussion.

Busy room at the event

For more information about the project, contact: k.liddiard@sheffield.ac.uk