Ubuntu and Inimba – and my poster presentation

Today was the first day of the World Congress of the World Federation for Mental Health, and I had my poster presentation. It went very well, and the conference had a much more innovative character than yesterday. It was good to be there.
The conference started at 8.30, so once again I had to get up early, grab my leaflets and poster, have a quick breakfast and then walk about 15 minutes to the CTICC. The fist session I attended was the one on Advocacy and Human Rights, with 4 speakers.

The first speaker, Shona Sturgeon, talked about Mental Health Non-Governmental Organisations: the challenges of mental health and development, and highlighted a little bit of history. In South Africa, in the past 20 years the NGO’s moved away from delivering charity to targeted vulnerable groups and shifted to developmental cooperation. In the past the NGO’s worked For the users and not With the users.
Also the advocacy has changed from movements who acted within the laws, to movements that actually challenge and sensitize the government. Also persons with disabilities are raising awareness on important themes, such as promoting human rights, prevention of mental problems and early intervention. The concepts of de-institutionalization and Community Based Rehabilitation are not yet fulfilled, and the Ministry of Health says it isn’t their task, but one of the Ministry of Social Affairs (and of course the Ministry of Social Affairs is pointing back at the Ministry of Health). So it looks like nobody is taking responsibility for making this shift. But mental health is a shared responsibility of all. In politics, the public is the key to awareness.

Then Sharon Kleintjes spoke on behalf of PANUSP, of which the name has been changed into PANPEP: the Pan African Network of People with Psychosocial Disabilities. This was decided on last week’s work conference. The new name PANPEP is more appropriate and more in line with the UN Convention on the Rights of Persons with Disabilities. The name PANPEP is not service- or torture related, but has a focus on the people and stimulates the perception of our wish for a meaningful life.
PANUSP (PANPEP) was established in 2004 at a conference of the World network of Users and Survivors of Psychiatry (WNUSP) in Veijlle Denmark, where user representatives from Africa decided to establish a regional organisation for the African continent, just like ENUSP (European Network). In 2005 PANUSP/PANPEP had it’s first meeting in Kampala, Uganda, and Moosa Salie from Ubuntu Centre in Cape Town was elected as the chairperson. At the moment Zambia, Uganda, Ghana, Tanzania, Rwanda, South Africa, Kenya, Nigeria and Malawi are represented in the Pan African network, and the establishment of national user organisations in other countries is encouraged. But funding is of course a problem. The Pan African network was funded by the Foundation Open Society Institute, and most user organizations are funded by the Ministry of health, Basic Needs, other disabled people’s organisations (DPO’s) or the World Network (WNUSP). PANPEP advocates for changes in policies and legislation, to shift from treatment to enablement, including income and sustainable livelihood. PANPEP is building partnership and supporting independence. Users have the right to self representation and self determination, and the cultural barriers and poverty need to be solved. PANPEP needs active members, with a clear vision, advocacy skills, active participation skills, and human and financial resources to achieve a sustainable change.

The third speaker was Jeanne Nicklas-Faust, who gave a view on the UN Convention on the Rights of Persons with Disabilities. I heard her say: “and the CRPD is especially relevant in developing countries”. That is such a typical remark for the Western World, to think that the West is better, and that human right violations only occur in developing countries. That is very untrue. Psychiatry in developed countries may even be worse than African psychiatry, because for example the resources are there to keep people inside psychiatric institutions for a lifetime, and the pressure to comply is all over. That is a severe human right violation. The fundaments of colonization are apparently still present. But we can actually learn a lot from Africa (and that will be illustrated a few paragraphs ahead).
But her speech wasn’t bad (she was actually the first caregiver who I heard mentioning the UN CRPD, so that is a milestone). The above was just a painful remark she made. She had at least some sense of the meaning of the CRPD and talked about a paradigm shift and moving towards the social developmental dimension. She linked article 12, Legal Capacity to article 15, Right to physical and mental integrity. But as a typical carer, she was worried that “the right to make decisions”, which includes the right to deny a treatment, could be harmful considering “the needs of these vulnerable patients”. I responded to that by saying that for example cancer patients have the right to refuse a treatment, and they will die of cancer, but why isn’t a person with schizophrenia allowed to die of schizophrenia… In the following discussion a lot of good points were made:
One size fits all solutions in mental health care ARE a violation.
A lot of people fear treatment in psychiatry, so they don’t reach out for help, but when the system changes, they don’t have to be afraid anymore and that would mean more early intervention, which is generally less complicated.
Also the point on insecurity of consent; when it’s questionable whether a person understands the consequences of a certain choice, or that the person might rethink their choices later and might have done the wrong thing. But of course it’s also questionable if mental health care can fix all problems, or that they sometimes also don’t have an answer. Uncertainty is a part of life.
And then there was a practitioner who was afraid to be sued if he didn’t give medication to a patient who was having a psychosis, and who was asking for another structure so that he wasn’t the only one responsible. (I passed him a copy of my poster, pointing at shared responsibility in supported decision making).
A final remark was made by one of the many users in the room, who said that in the organization where he worked, for every member of the board, there were 2 users involved, so that the decisions were balanced and in accordance with the users. I think this is a great idea which should become a policy.

John Copeland came to talk about the Great Push again, and his idea to have a People’s Charter on Mental Health: a document to send to the UN about what the “mental health world” expects from the UN in terms of scaling up services and so on. (He didn’t mention the UN CRPD at all, I doubt if he knows it’s existence). In his opinion the UN didn’t talk about mental health at all, and he thought it would be necessary to advocate for a High Level Special Session on Mental Health at the UN. In such a special session representatives from every countries government are present to talk about certain issues. I didn’t like this idea. The persons from the government aren’t very progressive in terms of mental health care (most countries still have paternalistic laws) and the caregivers just want to scale up psychiatric institutions, the number of psychiatrists and psychotropic drugs. Besides that, we know that there IS and has been a lot of discussion at the UN about mental health care: it was the most discussed topic for the newest UN Convention, the CRPD (it had been a long international discussion whether people with psychosocial and/or intellectual disabilities could have the right to legal capacity, but of course they can, since there are some very good practices showing that it is possible, and it would be very weird if the UN would exclude certain groups). So mental health IS an issue at the UN. I don’t think a so-called People’s Charter on Mental Health makes any sense.

Then Sipho Mjok shared his personal story with us. He is a person with an intellectual disability, who has lived in several institutions since he was young. At age 14 his talent for swimming was discovered, and he made it to be an international swimming champion with over 150 medals. He represents South Africa for example at the Paralympics. His presentation was very positive, mentioning things he liked, his abilities, talents, dreams and his pride. He was obviously enjoying his life, and he was proud to be a role model for other people with disabilities. The sky is the limit he said. Dare to dream big. His personal life story made it clear that every user is a person with a life. It was very good that he showed his feelings and capabilities. This is the best way to counter stigma.


Then at 11.00 came a very impressive presentation of Pumla Gobodo-Madikizela, a women’s right advocate, who took part in the Truth and Reconciliation Committee. She talked about: The Mary Hemmingway-Rees lecture “Forgiveness and the Maternal Body: Exploring an African Ethic of Interconnectedness”. It was in the main auditorium, plenary for all participants. This was definitely the best speech of the day. She talked about traditional African values, such as Ubuntu and Inimba.
Ubuntu means you can’t be human on your own, humanity is interpersonal; I am what I am because of who we all are.
Inimba is a spirit inside your body, the one that gives the response of empathy and forgiveness. It is the maternal instinct of a mother to her crying baby. Inimba moves a mother to help. What a woman feels is felt by all.

Pumla Gobodo-Madikizela emphasized that not everything can be captured in empirical research, and evidence based analysis. She told about sourcing the seed of our soul, and how she follows what her guts tells her (Inimba).
Her education as a psychologist was very western and limited, and she felt like psychology should learn from the older traditions, wisdoms and practices that have proven to work. The fact that it isn’t written, doesn’t mean it is backward or doesn’t work. Compassion and the experience of being human are powers to the process of healing. It is hard to describe or unpack what “feeling for” exactly is. It is hard to identify or to put in an evidence based, scientific framework. But why is there such a need to control and put everything in a box? Not everything has to be measured. Life is not just frozen science. Science has moved away from humanity. Why is there a need to define, contain and locate what gives us comfort. Ubuntu and Inimba are fascinating. Just let it be and let your body and soul resonate. It is the human power of the world. It is interconnectedness. We don’t understand it, but it works. The experience is that it is done with real people and it works. Why can’t we just celebrate that it works and help as many people as possible. Make each other people, engage, enrich and share. No one is broken, we are all people, so let’s give everyone their humanity, even when there is no scientific research.
Everybody applauded and thanked her for this great powerful speech which really addressed a universal cry. It was really a heart warming session. By far the best of the day.

At 12.00 there was a presentation on the cycle of poverty by Vikram Patel (about the same as he had presented yesterday at the Global Summit). It was another research presentation, claiming that providing mental health treatment lead to poverty reduction, but that poverty reduction (only by cash support) doesn’t really lead to a significant improvement of mental health (especially not when it comes to loans). It was quite a poor research so to say.

And then I had my own poster presentation, officially from 13.30 to 14.30. I installed my poster just before lunchtime (13.00). I was originally at quite a bad position in the row, but I saw a blank poster board at the beginning of the row, so I moved myself over there. Then I had about the best spot of all! The organizers appeared to have given us the wrong dimensions of the poster format, so quite a few posters didn’t fit on the poster boards. Mine was also 38 cm too long. The lower part with contact details was laying on the floor, but I used that part to display my leaflets. It actually looked quite nice. The conference organizers came by to apologize, and they offered me the possibility to display my poster again tomorrow as well. I’m very happy with that, because it is likely that I can inform more people tomorrow.
A lot of people took my leaflets and a small copy of the poster. I got a lot of compliments, and people were even bringing other people to point them at my poster. I would like to call that a big success :) I stood next to my poster from 13.00 till 14.30, and then again in the coffee break from 15.30 to 16.00. Then I went to attend another session of speakers (which wasn’t really special) and at 17.30 I collected my poster again. They said they were going to arrange bigger poster boards now. But actually I don’t really mind about the size. In my opinion it was perfect. My model has definitely landed in Africa, and I am very proud of that. Even somebody of the South African Department of Health (John Parker) was very enthusiast and even rather astonished by this model. He invited me to meet him next week, and then I can also see his project called Lentegeur (he is also a psychiatrist). I informed and inspired a lot of people today, and I’m really proud of that. I hope Africa chooses to scale up the social model of mental health care instead of the medical model.

Today the conference was actually inspiring and I have met a lot of interesting people. It was a very special day. I am very proud and pleased. And again it is late now, and I still haven’t finished the report of the Pan African Network of People with Psychosocial Disabilities PANPEP. But just a few more days of conferencing and then I’m free. I really hope to finish the official report this weekend, and then I’m done and satisfied.
Love you all!