Emma Mitchell, UK
My body collapsed 10 months ago on 10 February 2016. One minute I was sitting in a meeting room (my performance appraisal – it was a good one); six hours later, I was in bed unable to move, with numbness and shooting pains across my legs, arms and chest. I stayed in bed for two months. Ten months later, I'm at home on sick leave.
It was while I crawled home, stumbling between benches, lifts and seats, that I realized how much of our infrastructure is designed by able-bodied minds. And how so many with disabilities should be awarded Olympic medals just for fighting their way through it. I had to think and work harder just to get from home to work. It usually took me 20 minutes; that day, it took me 2 hours.
For the first seven months I worked in bed, eventually moving to the kitchen table. With technology, and the support of my boss, clients and team, I could work. I was so grateful to be able to do so – in those moments, I could forget my physical disability.
Other parts of my life were not normal. Years before, I had to fight to have children, eventually being blessed with two lively, wonderful, adopted daughters. We ran, cycled, jumped, danced, played and sang our way through life. I had worked tirelessly to ensure they had the strongest foundation for life, and to try to heal the wounds of their early years. It was horrific to hear their cries when they had to leave me alone, or their screams of anger when I couldn’t play with them. One of my daughters wrote a story about how she had lost her old mum and how she didn’t want to lose her new mum. It broke my heart.
I feel as if I have lost myself too. I’ve always believed in “mind over matter” – that I could determinedly push my way through all obstacles. I’ve run a marathon, done a triathlon and cycled across Poland, among other things. I was (am?) driven and ambitious. I’ve always worked in HR, wanting to make workplaces better and for more people. Sadly, I’ve not been able to work for the last two months. With this illness (eventually diagnosed as ME), pushing myself makes me sicker.
A doctor told me that I will look back on this period of my life with gratitude; that I will emerge stronger and better. I don’t feel that at the moment. It’s uncertain if and what a recovery will look like, and I’m still grieving the loss of many things: physical exercise, reading a book, eating what I like, wine, socializing, traveling, being an active working mum and wife, being the mum I want to be for my daughters ... I’m noticing a new feeling of vulnerability, as I am dependent on some, and fear the judgments and ignorance of others.
It’s only when we need something different as employees that we genuinely discover who our employer is and what they stand for. I am deeply grateful to work at EY and have the boss and colleagues that I do. They have never questioned my abilities or commitment to work. I’m thankful for the technology that enables me to have options, and hope we find a way to make regular homeworking a new norm. I want to be strong enough to do more with the kids and get back to work. I struggle between getting back to work “sooner” versus getting back to work “stronger” or “strong enough” and on a sustainable basis. The idea of commuting fills me with more horror than any physical challenge I've attempted in my lifetime – I'm sure I'm not unique in that!
I also worry that, when I get back to work, I’ll be different and won’t be able to approach work in the same way as I did before. I worry about how others will see me; will they see me more as a burden than a blessing? And how will I manage trying to deliver my best while maintaining my health for myself and my children? I fear that I may let myself down and won’t fulfil my potential to do, or be, more.
Ultimately, I fear that I will let my kids and husband down; that I won’t be able to provide for them. Then I give myself a good talking to and remind myself that I’m lucky, and to develop a thicker and more appreciative skin. As I hear more from others, and learn more about disability, I know I am very, very lucky. Most have much more significant disabilities and have battled disabling environments and attitudes throughout their lives.
I wonder about opportunities missed from accessing the talents of the millions of disabled people in the world, and question why we focus more on “reasonable adjustments” as opposed to recognizing the unique talents, insights and value disability can bring. Resilience, courage, patience and perspective are things I’m starting to develop more deeply than I ever have before. I wondered how my medical condition could serve others, and I decided to write this.
Most of us will have a disability in our lifetime. We think its something that happens elsewhere and impacts others. It’s not. Disability is relevant to us all. Most of us will get old (if we are lucky) and, over time, our bodies and minds will change.
That means, for selfish reasons alone, we all need to learn about what disability means, what it feels like, and how employers and wider society help or hinder those with disabilities. I love the quote “Privilege is invisible to those who have it.” The world is led and constructed by those with privilege. Sometimes, they make “reasonable adjustments” to the norm, but rarely do they look to change the norm itself. With disruptive technologies and scarcities of talent, it’s the norm that needs to change – continually – if businesses, economies and societies are to thrive. And it starts with us.
More than ever, the world needs leaders and people who are courageously curious. We need to overcome fears of asking questions about people different from ourselves, be open to looking at the world from another person’s point of view, and willing to change how we see, think and act as a result. That means being curious about disability too.
But where and how do we start? And how do we avoid making mistakes or causing offence? As someone with a disabling medical condition, I promise not to take offence if you ask me a question that’s intentionally curious. And, if you’re looking for a starting point, I would go for: “I understand you have ME; do you mind talking about it? I’d really like to listen and learn more from you, but don’t want to cause offence …”
“Privilege is invisible to those who have it.” And well-intentioned positive questions will help us to see more. What more could we collectively achieve when we do?