The Huffington Post ran an article on September 10 by Erin Santos with the great title of “Awareness… What a Bullsh*t Word“. It challenges everyone to go beyond noticing tragedies to taking action. “Action saves lives, awareness does not.” The comments are very interesting as well. How do we get people to take action?
It reminded me of a post I had started and never finished. So I went back to the drafts and here is what I had written so far. This was intended to be specifically about stillbirth.
But why is it that there is so little public support and awareness? Cancer has successfully become something that is openly talked about. One can become a survivor, massive events and fundraisers are hosted, companies encourage employees to fight for a cure and the list goes on. One reason might be that more people are affected by it. The other important reason might be that the medical profession has a better idea of what causes some forms of cancer and how it can be treated. The more I learn about child loss in its many forms, the more apparent it becomes to me that we do not seem to know much about it. It is a mystery and this lack of knowledge, the factor of the unknown pushes it more towards being a nightmare. One cannot rally the troops without knowing where to go or what to do. In that sense it becomes even more important to bring the topic out of the shadows.
I might have to adjust this paragraph to be more specific about adult cancer or maybe even specific cancers like breast cancer or prostate cancer. Many other forms of cancer are rarer and research on it is limited. My father died of a glioblastoma (brain tumor) and the tumor was extremely aggressive. There were hardly any ways to fight it and survival chances were very slim. Some forms of childhood cancer are apparently in the same category.
But back to the topic. In my opinion the first problem is that it is a lot more difficult to address a problem that one cannot clearly provide a cure / solution for. Once it is possible to say this is the problem, it affects this many people and we need this amount of money to achieve this result, it might simply appear achievable. If put into comparison to stillbirth for example, all we know is that 50% of stillbirths in the developed world are unexplained. Nobody knows why it happens. All we can do is to ask for an unknown amount of money to even identify what might be needed to prevent it.
My second point is about resources on a global level. 98% of stillbirths occur in low and middle-income countries. 55% of all stillbirths worldwide occur in rural families in sub-saharan Africa and South Asia. 50% of all the stillbirths in low-income countries occur during labour and would likely be preventable with better access to medical care and skilled birth attendance. That are 1.19 million babies that could potentially be saved each year (statistics from Lancet Stillbirth Series, 2011). Take a break here and re-read that sentence. Try to comprehend the amount of suffering this adds up to. I am aware about this fact, but what am I doing about it? Probably not as much as I could and I am not proud of saying that. But I doubt that anyone looks as this rationally, i.e. by asking where I personally can make the biggest contribution to save lives and then to act on those things. Rather we respond emotionally to what is close and important to us. This is a truly ethical dilemma. The realization that experimental and almost futile treatments for a single ill person in the developed world could possibly save dozens if not hundreds in other parts of the world is a very hard fact to accept. Would all of us have to take more action against global poverty, draughts, no access to clean water etc.?
This leads to my third point. The sad truth is that there are a lot of tragic illnesses and events around the world every day. We are in competition for attention for good causes and every person only has a limited capacity to act. Where we spend our limited personal resources is a totally personal choice that will be affected mainly by personal experience and what is dear to our hearts. If we have a friend who dies of cancer that might be something we devote time to. If a child dies, that becomes the center of our activities. Some people might have different callings altogether, such as saving animals. I would assume that most people who suffered some kind of tragedy are not only aware, but active to do something about it. Suffering cultivates empathy! People who suffered tend to be active for what is important to them in my experience. And they extend their actions to others who suffer more easily than maybe other people. However, logically this means that illnesses that affect more people will typically have more supporters.
If we want more action, it comes down to three options:
- Activate people who are not active at all or on a very low level.
- Get people to devote more of their personal time or resources for good causes.
- If capacity of personal contribution is reached, only reallocation of personal resources would work, i.e. poaching a super supporter from one cause to another.
This problem is not new. Volunteerism is largely driven by a dedicated group of people in Canada. StatCan reports that in 2010, “10% of the volunteers accounted for 53% of all volunteer hours. […] Over one-half (59%) of the volunteers said that they had been personally affected by the cause the organization represented or supported. Almost one-half had become volunteers because they had friends who were involved (48%)”. The real challenge is to get the inactive people to volunteer for any good cause! With regard to donations it appears more evenly distributed, although donations like volunteering increase with age, household income and education.