The meaning of birthdays

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

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

We’re really thrilled to share this very special blog post written by Living Life to the Fullest Co-Researcher Sally Whitney. In this post, Sally shares the meaning of birthdays and getting older as a young woman who has had complex, chronic diseases since adolescence. 

Getting older

I have always loved birthdays. Since I was a small child I remember counting down the months and days until my next birthday. I would always, and still do, have elaborate festivities and parties to celebrate the occasion. I also try and stretch out the celebrations for as long as possible and it’s not a birthday unless I am wearing a badge declaring it loudly and proudly.

As I have got older I have noticed my peers and relatives becoming less and less excited about their own birthdays and bemoaning getting older. I was aware that my parents weren’t super keen to reach major milestones such as turning fifty and I’m pretty sure that if I had been asked as a child when you are officially ‘old’, I would have said 50 was an old aged pensioner.

Negativity towards Ageing

However, I have increasingly noticed negative attitudes towards getting old and ageing. My friends seem to have been complaining about birthdays since we all turned 21 – that was 10 years ago! 21 is supposed to be a momentous age, a day to be remembered always. I did have a big celebration but I remember the awkward smiles and pitying looks: I had recently escaped hospital after a nearly 8 month stay and had been lucky to escape with my life. I was also skeletally thin, with a BMI of 11, and coming to grips with a new diagnosis with a dizzying array of symptoms and medications. I was still in the midst of shrugging off a damning misdiagnosis and struggling to work out who I was and where I fit into this new world I had re-entered. I had to learn everything from scratch. From eating dinner at a table and using cutlery to ordering coffee at a café. So my 21st to me was an accomplishment of freeing myself of the chains of hospitalisation (thus a reason to celebrate) but to everyone else it seemed like I was desperately hanging on to the very precipice of life.

I have celebrated each consequent birthday with jubilation and pride. I have wondered why my own perspective is so radically different from the attitude of my peers and society in general.

Youth celebrated

On the whole, youth and all that comes with it is held in high esteem. Products are sold to make us feel or look younger. The concept of drinking from the fountain of youth capture society’s inclination to want to stay young, fresh-faced and nubile. The dread that is conjured up by facing the next big birthday seems to be an accepted and almost automatic feeling. However, I really don’t feel this. For me living one year more is a feat to be celebrated. I am beyond proud when I reach another year older. I am proud of both my body and mind for remaining strong enough to have aged another year.

Effects on body, body functioning less well

Perhaps the fixation on youth and negative attitude toward ageing is partly due to the effects on the body that growing older incurs. As we age the somewhat inevitable wrinkles, “saggyness” and weight changes are fought against fiercely. The changes to the body reflect our age more clearly than the age we might feel in our minds. But perhaps it’s more than the an aversion to wrinkles that causes us to protest the ageing process? Perhaps it’s the more subtle understanding that our bodies are going to start functioning less well? In an able-bodied woman a small loss of bladder control, for example, may be a source of great shame and concern. However, I have experienced the failure of various organs and organ systems since the age of 17. I no longer expect my body to function flawlessly. At several stages during my illness I have felt very much like an old lady – I have the bone density of a great-grand mother for example. However, despite needing the level of medical treatment and care of someone a lot older than me, I still rejoice at the dawn of each new year of life. It is the very fact that my body still functions, however poorly, that I am celebrating. It is not how well it is functioning but the fact it is functioning enough to keep me alive. This, to me, is something to be celebrated.

Avoidance of growing up and occasions to “adult”

There also seems to be a trend in our culture towards the rejection of being an “adult”. We have coined terms such as “adulting” and actively seek ways to avoid feeling like an adult. Perhaps it is the idea of giving up the fun party times that a non-adult enjoys or the amount of responsibility that being an adult entails that had caused us to shy away from taking on an adult status. I have to admit that, despite my 31 years of age, I still feel very much like a child in some ways. However, in other ways I feel like I have a soul older than my years. Perhaps this is because I became ill whilst still a teenager. I had just started to enjoy partying and going out when I was stopped in my tracks by a rapid decline in health. Skip forward 13 years and I have only been ‘out partying’ a couple of times. I have missed my responsibility-free years and opportunity to be reckless. Parts of me crave the opportunity to go back and reclaim those years but other parts of me have had to grow up quickly. I recognise the implications of reckless behaviour as every aspect of my life needs careful planning in order to reduce serious health consequences.

Care and independence

The very nature of needing to be ‘cared for’ also blurs the boundaries of childhood and adulthood. In some ways, I still haven’t had to grow up as I haven’t had the opportunity to take on simple grown up things like cooking for myself or the more significant aspects of ageing like getting a job.

It is also interesting to note the cultural differences around the world with regard to attitude towards ageing. In some countries, growing old is something to be revered and the elders in society are held in great respect. In fact, they are considered to be the heads of both families and society. Whereas in the current climate that I live, it is the youthful celebrities who are revered – the shinier and more youthful the better! As I have lived through the different experiences that life has thrown at me, I have matured. I have grown through life lessons and I recognise that I would not be the person I am today if I had not persevered and used the challenges to develop my character. Every birthday I jokingly ask, “do I seem wiser today?”. However, culturally, it seems that the substance of wisdom is not as valued as the froth and frill of youth.

Age-based milestones

There is also a conception that as we age we need to attain certain milestones at certain ages. These expectations are sewn into the fabric of our society. There is an expectation that after education we will go on to follow a career, rent a home, find a partner, buy a house and get married and have a baby. I think one of the reasons people shy away from the joy of growing older is that they feel under pressure to not only reach these milestones but within a certain timeframe. For me, these milestones have become somewhat meaningless. I have reached a place where I no longer measure my life by these pre-determined chapters. I was never able to complete university and required 24 hour care before I could ever graduate. My ill health has meant that for a long time my full-time job turned into trying to stay alive. I felt resigned to the fact that I would never accomplish any of these milestones at all and it seemed as if society was determined to prevent me from doing so.

At one point I looked into buying a flat with a substantial deposit I had accrued. I researched the market only to find that there was only one mortgage provider (specialising in clients with long-term illness) willing to lend to someone who lived on health benefits without a career. This provider would not lend to me however as I had student loan debts from my time spent at university. The only way they were willing to lend to me was if I paid these off, which I would have had to do using the sum of money I had saved, leaving me in a position where I no longer had a deposit. This was heart breaking as I felt that I was being deprived the opportunity to be a homeowner because I had chosen to undertake further education.

However, even the failure to meet expected milestones has not rid me of the joy of celebrating living another year longer. My life is measured by different milestones. The point of reaching diagnosis, of getting appropriate care in place and more significantly accepting my disability and what it means. Each birthday is a celebration of another year where I have fought to be heard. Fought to be provided the correct treatment. Fought to keep my body ticking over into a new year. Ultimately it is a celebration of still being alive.

This is cause for celebration indeed. Since I don’t know what the future holds health wise, I have to live my life in the present and value each moment. This could be said for any person as no one knows what is around the next corner. Someone may have their life planned out and may not feel like celebrating becoming a year older if they haven’t followed their plan to the pre-decided timescale, yet they too live in the face of uncertainty. Perhaps this uncertainty isn’t as apparent but it is still true. This may be a point of learning for those living healthy ‘normal’ lives; that the present moment is the only reality we have and it needs to be cherished.

My grandfather and I decided in my twenties that if I had not graduated from university by the time I was thirty then we would have another form of graduation ceremony. A ceremony where we celebrated that I had navigated the hurdles and weathered the storms of remaining alive despite life-threatening conditions. His acknowledgement of the fact that I was still maturing as an individual in the face of adversity was just as significant, if not more, as graduating from university and following a career. I felt that he understood my need to celebrate my own vitality. In the end, the year I turned 30 was the same year as I got engaged and got married and moved in with my husband. Our wedding became a celebration of not only the joining of two individuals, but a real festival of being alive, rejoicing in the moment and acknowledging the hard road we had travelled. While my heart is still beating, I will keep on celebrating being another year older. I will strive to view every wrinkle as a roadmap of my life and welcome each year with thankfulness. And yes, I will continue to keep wearing a Birthday badge.

Sally Whitney, Living Life to the Fullest Co-Researcher

Happy International Day of Disabled People 2018!

International Day of Disabled People UN logoToday, 3rd December (2018), is the International Day of Disabled People. In 1981 the United Nations proclaimed today as a day of recognition and celebration of the achievements of disabled people across the world.

According the the UN (2018), the International Day of Disabled People ‘aims to promote the rights and well-being of persons with disabilities in all spheres of society and development, and to increase awareness of the situation of persons with disabilities in every aspect of political, social, economic and cultural life’.

Here at Living Life to the Fullest, we fully support the idea of celebrating the contributions of disabled people – one of the key aims of our project is to explore and mark the contributions children and young people with life-limiting and life-threatening impairments make to their families, schools, and communities, as well as the multiple other areas of their lives that are important and meaningful to them.

This year, the #PurpleLightUp movement has grown with verve. The campaign, a disabled employee led movement created by the organisation PurpleSpace to re-balance the narrative around disability, deficit and work, is a global celebration of the economic contributions of disabled people. Channel 4 is a big supporter of #PurpleLightUp, marking the International Day of Disabled People by launching a global #PurpleLightUp campaign across its network. Channel 4 will broadcast a range of initiatives that celebrate economic contributions made by disabled people, which is in line with the the International Day of Disabled People’s theme of inclusivity.

The first film, which was broadcast on Channel 4 on November 30, was funded by eight major organisations: BT, HSBC, Lloyds, Nationwide, Lloyd’s of London, Reed Smith, Scope and Virgin Media.

While it might be worth critically questioning why only the economic contributions of disabled people are worthy of such celebration, any campaign that highlights the significant discrimination of disabled people when finding and being in employment is, of course, a positive and necessary move. According to the Disabled Living Foundation, just 3.5 million of the 13.3 million disabled people in the UK are in employment. For autistic or learning disabled people finding employment is much harder. According to the National Autistic Society just 16% of people with autism are in full-time paid work, while less than 6% of learning disabled people are in full-time employment. In Living Life to the Fullest, we have been told routinely by young disabled people with life limiting and life threatening impairments of the relentless barriers they face within both education and access to meaningful employment.

Our Co-Researcher Emma Vogelmann, who works for Muscular Dystrophy UK (MDUK) on policy work and disabled employment, said “Recently, the Employability Project has been busy setting up new and exciting opportunities for young disabled people. Our Employability weekend was a huge success with great sessions to boost people’s confidence entering the work world. Our attendees really benefited from disability tailored advice which can be hard to find at colleges and universities. We’ve also set up an exciting new Mentoring Program to match people on the Moving Up project with a mentor to give them ongoing support. This is an incredibly important piece of work for MDUK as we see so many young disabled people who struggle to find work when they are very willing and more than able. We want to show young disabled people why they should be confident in their abilities.”

However, we should also ask critical questions of the big businesses promoting #PurpleLightUp. Virgin, for example, has been been strongly criticised as a key contributor to the privatisation of the NHS. Awarded almost £2 billion worth of NHS contracts over the past five years, Richard Branson’s company has become one of the UK’s leading healthcare providers. Shockingly, even the Department of Work and Pensions (DWP) contractors Atos is supporting #PurpleLightUp. If we remember back just a few years, Atos led the disastrous and damaging Work Capability Assessment (WCA), as well as the fitness-to-work assessments for Employment Support Allowance (ESA), which caused disabled people and their families significant devastation and distress in the name of austerity. Furthermore, Atos now supports Personal Independent Payment (PIP) assessments, and thus, according to Disabled People Against the Cuts (2018), are ‘in part responsible for the long delays declared unlawful in the courts that have left people without income, food and at risk of losing their homes’.

So let’s enjoy the International Day of Disabled People as a day to mark and celebrate the brilliant contributions of all disabled people across the UK and the world, as well as a time to mark the importance of disabled people’s access to rights and better wellbeing. But let’s remain cautious of the ways in which such celebration gets taken up, the new meanings it gets imbued with and why, and most importantly of all, its co-option by those companies and organisations that could do a lot more to employ, support and advocate for disabled people and their families.

References

Disabled People Against the Cuts (2018) Atos now recognising our ‘hardships and struggles. Online. Available from: https://dpac.uk.net/2015/06/atos-now-recognising-our-hardships-and-struggles/ [Accessed 2/12/2018]

UN (2018) International Day of Persons with Disabilities – 3 December. Online. Available from: http://www.un.org/en/events/disabilitiesday/ [Accessed 2/12/2018]

 

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