I have just returned from the African Palliative Care Association and Hospice Palliative Care Association of South Africa joint regional conference in Johannesburg, South Africa and I am inspired.
This was my first palliative care conference. A year ago I didn’t even know what these words even meant. Before the conference started I could have told you about palliative care and perhaps more importantly why it is important. I would quite possibly have waxed lyrical about it being everyone’s right to live a life free from preventable pain. I might even have told you about someone inspiring that I’ve met who has spoken about the importance of palliative care to them.
But, if I am being honest, before this conference I wouldn’t have really felt it.
Something in the way I think about palliative care has changed over the last few days though. Trying to put my finger on exactly what is difficult – so much has happened. It could have though been the moment when a Ugandan journalist who I was sharing a stage with let a single tear drop roll down her cheek as she talked about her Aunty being unable to access basic pain medication in her dying days.
It could also have been when a complete stranger, who I still don’t know the name of, approached me and talked to me about the burden of feeding her bed bound mother every day as she was too frail to feed herself and that the local hospital would not accept her because, so they said, “there was nothing wrong with her”.
It might even have been that unspoken moment when a delegate was asked if she had children and after a moment’s pause she responded that, she “used to”.
But of course it was a cocktail of this and more. It was spending 4 days in close confines with inspirational people who were dedicating their lives to ensuring as many people as possible experience the palliative care that they need.
People who had talked the Bush administration into setting up a fund for palliative care in their HIV response programme. People who had pioneered palliative care in Africa 2 decades ago and were still as passionate and articulate as they ever were. People who felt a guilt for attending a palliative care conference because it meant that they were away from their patients bedsides for just under a week.
The passion and empathy of so many of the delegates from around the world touched me in a way that I didn’t necessarily expect it would.
On the final evening of the conference there was a diner reception. As I was standing watching delegates dance, joke and chatter, I thought to myself that it felt just like a family reunion. There was a tacit acknowledgement that everyone understood, at least on some level, why everyone else was there. Just like a family is bound by the bond of blood so at this conference it felt like there was an unspoken bond in the knowledge of, and passion for, palliative care.
As with all families though, there also exists unspoken traumas that rest just beneath the surface. But standing watching delegates dance I reflected on what I felt to be the strength of this “palliative care family”. Palliative care gave each member the opportunity to be able to share these traumas that we all have with each other. Everyone was accepting and expecting to offer a ear when someone needed to talk about losing a patient, friend or loved one.
During one of the workshops Reverend Rick Bauer made a comment that stuck with me. He said, “When you are talking to a patient the most important thing you can do is be there 100% with them at that moment.” I think what made the atmosphere at this conference so special was that, almost without realising, delegates were 100% attentive to those around them and to others commitment to rolling out palliative care to all those who need it.











Back in 1997 Uganda was proud to lead the way in the provision of universal 













Eugene Grant: “I prefer the term dwarf”
Eugene Grant is a dwarf and the founder of the viral site EveryDayDwarfism that chronicles the day-to-day experiences of what it is like to be a dwarf in 21 century Britain. Despite his experiences, Grant is optimistic that he can contribute to changing people’s understanding of dwarfism. Steve Hynd caught up with him to find out more.
For many readers the term ‘dwarf’ is one they are not familiar with. I know some people are nervous about using it, afraid that it is derogatory. Can you tell us what the word means to you?
I personally much prefer the term ‘dwarf’ as opposed to others like ‘midget’, which many dwarfs I know find offensive. But, for me – and this is where the whole idea of political correctness becomes redundant – what’s more important are the intentions behind the terms used.
People can be ‘politically correct’ but employ such words with malicious intent; others may use quite derogatory terms without any idea or intention of insulting or hurting a person. It all depends on the way such terms are framed.
Can you tell us a little about why you set up EveryDayDwarfism?
The aim behind EveryDayDwarfism is to document and present just some of the things that I – and my partner who also has dwarfism – go through during our day or week. Its purpose is to try to make people just that little bit more aware as to the things we encounter as dwarfs.
A lot of what we experience, I would put down to stigma and discrimination still being relatively acceptable to lots of people. The whole tone of the site is not supposed to be angry or ‘martyr-ish’, but relatively neutral, matter-of-fact and informative.
It’s to say: ‘these things happen, quite regularly. I just wanted you to know’.
Within the EveryDaySexism movement, there is a strong feeling of finally ‘shouting back’. Within EveryDayDwarfism it also feels like there is quite a lot of rage, is this an important element of responding to discrimination?
It depends what you mean by rage. Rage is very important but it needs to be channelled in the right way and used very carefully.
Leaving out abuse in the form of physical violence, I think when responding to discrimination it’s vital to ask oneself: ‘what is it that I want to achieve here?’ and, more importantly, ‘how will I get this person to change the way they think and act towards me and others like me’.
Can you tell us a bit about how you coped with the attention and discrimination before you started chronicling it on EveryDayDwarfism?
It really depends on two things: the type of abuse, attention or discrimination, and the intentions behind it.
Some abuse – e.g. an individual shouting insults from a moving car – is best left ignored. What can you achieve when they’re 100 metres down the road by the time they’ve finished their sentence?
Others – the attention from a small child for example – is normally fine; although, as I wrote on the site, it’s often the reaction – or lack thereof – from the parents that is the most frustrating thing.
Some abuse though might manifest itself in the form of totally unprovoked physical violence or confrontation.
Have you been in contact with other dwarfs, how do they feel about EveryDayDwarfism? Do others relate to your experiences?
It’s very important that people don’t think that EveryDayDwarfism or my own experiences reflect those of other dwarfs; I can’t speak for them. Not even my partner.
However, I do know that lots of people like me experience such things – sometimes less so, sometimes more so.
If you had one message to the metaphorical guy in the street who tries to take a photo of you with his phone, what would it be?
Just stop, for a moment, and think: What are you doing? Why are you doing this? Why would you or your friends find that photo or film to be of any value or interest? What does that say about your character, as an adult, and how you think about and respond to people who are different? What if I was your brother, son or cousin? How would you see it then?
A bit of a long message!
You wrote for the Guardian about the portrayal of dwarfs in the media, do you see EveryDayDwarfism as an effort to counter some of that through the illustration of agency?
Not really, no. Sadly, but also deliberately, EveryDayDwarfism documents some of the negative things that happen. And in this way, there is a negative tone to the blog.
What I was trying to say in the article you mention was that there needs to be more boring, regular, neutral representation of dwarfism in the media – weather reporters, Masterchef contestants, Question Time panelists, kids on CBBC – whatever.
Basically, more portrayals of dwarfism that do not limit that person’s identity to ‘a dwarf’ but reflects what they really are: a citizen, a parent, a doctor or lawyer, a voter, someone with views, ideas, etc.
What has been the reaction of family and friends to EveryDayDwarfism, are they shocked to hear of such day-to-day encounters?
It was actually as a result of encouragement from friends to set up EveryDayDwarfism that I did.
Often friends have no idea of the things that I – and lots of others like me – encounter on a daily, weekly, monthly basis. Some have even been in situations with me when there has been abuse or something happen. Quite often, they are absolutely shocked at the way some people behave. It’s not a question of going looking for abuse or discrimination – that’s not a productive or positive way to live – it’s that, a lot of the time, this stuff finds you – seeks you out, interrupts your day, your evening, when you’re just trying to live your life. And that’s what I wanted people to realise.
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Tagged as Dwarf, Eugene Grant, EveryDayDwarfism, Interview, Steve Hynd