Kasumi Ito
Firstly, I'd like to ask you, how did you get involved in the movement?
Sam Badege
Which movement?
Kasumi Ito;
What movement did you first become involve in?
Sam Badege;
ahahah! The Movement of people with disabilities in general and the movement of People with psychosocial disabilities or users and survivors of psychiatry in Particular.
If I can begin with my background, is that; way back in my childhood I grew up in a faith-based family; where my parents and the community were promoters of charity, it was cattle grazing Community but really committed to their Christianity, so supporting people with various challenges was a tradition. It is that spirit that took me to disability movement, hopping to support them. Although I am a disabled, it wasn’t because of that, I mean, there are people with disabilities who are not involved anywhere in the disability movement, others go there because they are expecting charity from any kind hands, moreover the true movement of people with disabilities; a human right based one discourages that kind of understanding, as me the story is different, my people built my confidence to the level that I couldn’t bow to the challenges caused by Disability. I only had a feeling that together we can do something to improve on the situation.
Kasumi Ito
Yeah,
Sam Badege
my disability is physical and I experienced mental health conditions at one time, I used to have a feeling that I can be more of help than being helped, that’s why I got involved in building the Disability Movement in Rwanda right from its start and I am known to always be bothered by other people’s needs and challenges on addition to this any, I hate people who undermine the efforts of people with disabilities when they are fighting to improve on their situation, it gives me a sleepless night and many times, I find myself in an open Spat with those who compromise the interests of people with disabilities with individual’s interests simply taking the advantage of their positions in leadership.
When I was growing in the disability movement, getting filled with the spirit of Human rights promotion and protecting, I begun recognizing the Gloss Human rights abuse of people with psychosocial disabilities and the high insensitivity of this in our society; the so-called care takers (parents, siblings, relatives etc.) are the primary abusers, the communities (relatives, local leaders, Churches, mosques, cultural chiefs) ignore or don’t remember... to look for a solution. The victims are chained, caged, starved, battered, sexually abused etc... and it was a taboo for one to self-declare that he experienced any Mental Health condition because the consequences would be disastrous! But somehow, I could feel that something has to be done, that is when I started gathering simple cases, writing stories about them and sharing my views as well, but I actually dint have in my head something more to be done, I was ignorant of the existing service, I had no connection with the Hospitals, I had no connection with any psychiatrist in Rwanda who, by then, I thought they are saviors. I was not aware of the abuses being carried out in psychiatric facilities … until I met the fellow Users and survivors of psychiatry in the WNUSP G.A in Kampala, my advocacy was disoriented…because it was based on charity other than rights.
with this local Voice, however someone from Kampala picked me from the social media - in my Facebook, he was already involved in the World Network of Users and was organizing the WNUSP GA in Kampala "Sam, you're from Rwanda?" I answered "Yes.”, “We are looking around Africa, the groups of users or x users who will join us in the General assembly of the World Network of Users and Survivors it will take place in Kampala." then he wrote me an E-mail giving the details of the G.A, asked me all about myself, my background, my education, how I got involved in Mental Health Business, Everything…. I answered, and next was a formal invitation that was even my first time to go by plane ehhhh!! going to Kampala by plain. it was 2007.
Joining the WNUSP was a new revelation to me, I met the professors from internationally recognized universities, prominent Lawyers, influencers, well-educated and wealthy people all members of WNUSP, and I saw them speaking up right that he, at one time or still experiencing Mental Health condition of one kind or another, sharing the experience of the grievous harm which were done to them and the remedies that should be taken to prevent them, means to ways to protect and promote the rights of users and survivors of psychiatry on the globe. We together explored the world of Psychiatry, the importance of UNCRPD the treaty which was adopted 13 December 2006; how it can be exploited in protecting the rights of people with disabilities in general and in particular Users and Survivors of psychiatry, how we can all participate in encouraging our mother states to sign it and its protocol and how we can domesticate it…. I participated in the G.A with the purpose of learning more of the movement and find what is in it for my Country as well, I got the chance and I was elected among the Board members of the WNUSP Which gave me more access to relevant information and interaction with prominent guys in the Movement; Mousa Sallie, from UBUNTU South Africa, Tina Minkowitz, from Centre for Human Rights USA and Miss Jollin Santegodes from Stitching Mind -Nether Lands and Late Professor Gabo from Hungry, then friends from Uganda, Kenya Tanzania and across the world who creates the formidable advocacy movement that has changed the whole perception about psychosocial disability.
From the Kampala G.A. I returned home with a clear Idea of forming an organization thus NOUSPR- UBUMUNTU was founded. I started by looking for people with psychosocial disabilities and parents of ‘‘Good heart’’ The experience I shared from the GA and being a board Member made it easy for me the people trust me more, then we started forming NOUSPR groups around the country and NOUSPR UBUMUNTU became formal and fully functioning. UBUMUNTU is a Kinyarwanda word meaning humility we kept growing both in Number and services until we registered 2,078 members, in 12 Districts and all receiving psychiatric services, trainings in capacity building, advocacy livelihoods and the lest.
I relinquished the leadership of NOUSPR recently, because, not only that people with Psychosocial disabilities can now understand their rights but also have built their capacities and have an increased knowledge in leadership ? they can now decide their destiny. I am proud of my contribution and I believe Passing on the leadership to others is a sign of maturity and success in team building. I continue supporting and I engage in formulating the national policies in Rwanda, regarding Disability rights and help in different trainings.
Kasumi Ito
Thank you so much. Your parents had a mind of charity. What do you know they did, how did they do it/then?
Sam Badege
My father was a clergy, in the Anglican Church. My mother was a housewife, but very active in church, she sometimes could be the chairperson Mothers Union, Cristian Mothers’ clubs and mostly, at home she could receive many people on daily basis, the sick ones, the poor, strangers and guests altogether. Those who are possessed by the evil spirit, I could see her praying for them, inviting her friends, three or two of them to lay their hands on their head and heal them with mere prayers; they could pray and pray and pray Until you see someone waking up and move with strength and I could see them giving testimonies that he/she got healed from the prayers of my Esther-my mom. That is how I got inspired actually, though I did not believe in prayers alone, I learned from her that even without a thing to give, with a worm heart you can make people feel strong and overcome life challenges.
Kasumi Ito
When did you start to get involved in the movement? First, were you involved in the movement of persons with disabilities, in general?
Sam Badege
In general, when I was in secondary…
Kasumi Ito
Secondary school.
Sam Badege
Secondary school.
Kasumi Ito
You already get involve within the movement?
Sam Badege
I was in secondary School in Uganda when I come in contact with other people with disabilities who were also students and sharing our life experience in education, transport crisis to and from School and other inaccessible facilities, and how it hurts for many people to look down on us as people with disabilities, calling us delegatory names and many other issues. it was the time when the new government of NRA/M in Uganda had just been established and was interested in building grass-root based structures, so was the immerging of ‘‘Special interest groups’’ in which People with Disabilities were mobilized to form their own piriform that is how I got mobilized to be part of the Disability movement and I actually participated in the 1st General Assembly of the NATIONAL UNION OF PEOPLE WITH DISABILTIES IN UGANDA (NUDIPU) so I am among the Pioneers of the Disability movement in Uganda. hhhh!
Kasumi Ito
Are you from Uganda?
Sam Badege
Like many other Rwandans, my parents Fred to Uganda as early as 50s actually me I was born in Uganda, but I am a Rwandan who lived and studied there for a long time, I came back to my mother land Rwanda immediately after the war which liberated Rwanda from the Genocide of 1994.
Kasumi Ito
When you were a student of the secondary school, you established the NUDIPU?
Sam Badege
I didn't establish NOUDP as an individual, I was among the members who were Mobilized first to established it, I mean there were our elders who spearheaded the movement and those a like Elphaz Mazima, Emmanuel RUTAKYENGERWA, MWESIGYE James, SSERUNKUMA and many others.
Kasumi Ito
Firstly, you started movement in Uganda, not Rwanda.
Sam Badege
I got involved right from Uganda, but I started the movement here in Rwanda. I started getting involved in the disability rights activities, I actually initiated various activities that constituted to the full fringed Disability Movement in Rwanda. But what I spear headed as an individual and led it from informal to formal Organization is the Users and survivors Movement in Rwanda-NOUSPR- UBUMUNTU.
Kasumi Ito
In which year did you come to Rwanda?
Sam Badege
I came to Rwanda immediately after the war; in 1994. NUDIPU was formed, I think in 1988.
Kasumi Ito
I want to know how did you establish the NOUSPR.
Sam Badege
The NOUSPR.?? I explained it in details in the conversation above but I can add something more…
Kasumi Ito
Yes.
Sam Badege
I conceived the Idea when I learned that in other countries there are such Movements, and the name National Organization of Users and Survivors of Psychiatry in Rwanda- NOUSPR UBUMUNTU is based on how we explored the whole situation of Users and Survivors of Psychiatry in Africa and how the General Assembly agreed on the approach; we already had the MHU -Uganda, TUSPO ? TANZANIA, USP-Kenya, then one in Ghana, Zambia, etc. and all were registered NGOs at the National level, then we had a number of other countries which did not have same NGOs as a platform for the User, survivors’ rights that is how I thought of NOUSPR so as to have a Rwandan User, Survivors platform which is able to carry same message in same language and spirit with the rest of the Globe.... But actually, by that time we had not been able to internalize and identify our real problems as African People with Psychosocial Disabilities some went by the name ‘Users and Survivors of Psychiatric Services’’ when in Africa Psychiatric services are still very scarce, inaccessible and expensive. many Africans seeking medical treatment from traditional Healers, in shrines or die at home, live in detention for a long time or in institutions. there many, many, cases that do not match with the European or American Situation.
Kasumi Ito
I'd like to go back to the school. Did you go to the general school?
Sam Badege
Yeah. I went to formal schools like the non-Disabled, I studied business and completed very well.
Kasumi Ito
You told me that, in Uganda at…
Sam Badege
Right from Primary School!
Kasumi Ito
Yes, when you were a student of secondary school, the government changed the policy for inclusive education. All students, including persons with disabilities, started to go to general school?
Sam Badege
I think the Government didn’t Change the policy at the time when I was still a student, because I finished my university as early as 1992. With advocacy things change slowly by slowly and gets realized as time goes by. the Government started planning and procuring the accessible equipment and Materials for special needs education when I was already done with education..., me I am among the hasslers who had adopted the harsh life of Disability in inaccessible environment to the extent of forming a football team of people using walking aids (Crutches). a football fabricated in rags and playing it with crutches on muddy ground. there was nothing like inclusive leave alone inclusive education, maybe for the 1st World Schools .. I don’t know, there was none…, but still people with disabilities could endeavor to go to school with others in any way possible as you may understand it. I could climb a class or enter an administration office with stairs. I could do exams in 12 Kms or so, I could do the practical’s and pass with a distinction .... teachers were not aware or even mind about who is a student with disability or not.
Kasumi Ito
You are the student of primary. Did you go to the general school also?
Sam Badege.
If can talk specifically about my life, my primary education was very hard very, very heard. Actually, I studied some primary classes from home, during the rainy season I could stay at home and request my teacher to send me work through my siblings, and the good thing they could copy answers for me ? (don’t say I was cheating ehehehee!) So, teachers could rule it is not so compelling for me to be physically at school all the time, however I could not wait for the teacher’s decisions to go to school, I knew that without teacher and the black-board I was missing a lot, so I could push the walk to school. because of the load conditions and the distance, I couldn’t be at school on time, late and sometimes soily because of falling twice or thrice before I could get there, sometimes waiting out of school compound to fist get my clothes dry and the teacher punish me, but I passed primary level with flying colors!
Kasumi Ito
Your parents taught you to read?
Sam Badege
Yeah! I remember at the beginning my father used to write Numbers in the Sand with a stick and asking me to read after him, then the heyem book the bible, songs; Christian songs, praising and worship songs! I liked singing and it made me sharp as a child. I was good at singing and worshiping! I could sing and people say, "Wow, that's wonderful!" when I was still young They used to take me to church to sing in the children’s Coire.
Kasumi Ito
You lived in the western area of Uganda.
Sam Badege
Yeah. I was born in Western Uganda, I studied there. I came back to Rwanda when I had completed university.
Kasumi Ito
The secondary school was near than primary to your place.
Sam Badege
What? The secondary school I first went to, was in Kampala; central region an estimate of 340kms from Rubaare my home town, and I went to a boarding School. By that time most of the secondary schools were boarding schools and secondary schools you don’t need any other means for a disabled person to reach classes so, I enjoyed Secondary school.
Kasumi Ito
Okay. Near the school.
Sam Badege
Yeah.
Kasumi Ito
I'd like to go back to NOUSPR. How did you find necessity to have organization and start to mobilize people? You went to the general assembly in 2009?
Sam Badege
2007.
Kasumi Ito
2007, yeah. I think you are involved in NOUSPR before that. No?
Sam Badege
It was not NOUSPR as such, by that time, I had started chatting with the international community and my topic was always issues surrounding Disability life those who were already involved in the advocacy of people with mental health challenges, could as well chat with me. With social media to someone who doesn't move a lot communication was made simple, when the Internet came, I learned it and mastered it few days and the computer, I had earlier studied computer; micro soft office word, excel, publisher, so I could spend a lot of my time reading different kinds of information on computer, I was already filled with information about the rights of people with disabilities around the world, so in the disability movement in Rwanda I was among the informed cadres of the disability movement and this time I wanted to do something new and sounding with in the Rwandan disability community.
Kasumi Ito
Before NOUSPR became an organization, you talked to people?
Sam Badege
Yeah. It was already happening. I had the spirit to advocate for people, everyone who wanted me to. I told you how I was invited in WNUSP. It's because someone read my blogs about the situation of ‘the mad’’ people in my country and concluded that I know much about disability issues in Rwanda. By that time, we all used to to call them mad people, people who are mad and how they are mistreated in the hands of psychiatrists, in the hands of nurses, of caregivers. - derogatory terms.!
Actually, what I didn't tell you from the beginning is that in 1994, I think you red and know about the 1994 genocide in Rwanda I myself saw a lot of horrific scenes, I saw a lot of madness. devil walking on bare feet, if I can put it that way, yes efforts were being made to bring the situation back to normal but the crowd of deaths was still covering the Kigali Sky... the traumatic situation left many challenged mentally, so everyone was thing about what to do to contribute to the normalization of the situation.
Kasumi Ito
Yes.
Sam Badege
So,For us who participated in that whole process, some of us got mental health challenges too. Both the perpetrators and victims of Genocide suffered mental health problems, those who witnessed Genocide also were affected, even some of the UN Peace keeping forces got post-traumatic stress disorder, it was horrible! After many days, I was involved in organizing people also in 1994, and I was very active, Manpower was scarce and there was a lot to do. Then time came when I started spending nights without sleep, I could stay awake for a week or so, I started thinking about it and I said to myself, there must be something wrong with my head because even the country was getting stable but my worries were increasing day by day I ven reached a stage where I could spend a day indoors fearing that if I go outside people will harm me, my fried whom I used to live with suggested we must visit a psychiatrist we visited Ndera Psychiatric Hospital there, they gave me some drugs it was PTSD, They advised me NOT get involved in stressful work I started managing it and hid everyone who knew me never the less I started getting less counting in my group. The people I used to share everything with, working with they all started sidelining me me. "Why is he… Hey, how are you doing?" "I don't have time. Wait." I started hearing comments and mummers of such kind. I was seeing myself on the fore front with others who are trying to help the society back to normal and here, I was getting lesser and lesser counting, this triggered my voice to come up and I said, "No!!!, I can't stay like this I must shout out; where is my rights!! and I started talking, debating and writing articles and blogs about mental Health issues and Human rights, highlighting cases of abuse, discrimination etc.
That is how I started getting involved in Users and survivor’s advocacy! [36:22]
Kasumi Ito
What group were you active when you came to Rwanda?
Sam Badege
Of course, it was the Disability group advocating to the new Government.
Kasumi Ito
I'd like to ask you, how were you elected as a board when you participated in the general assembly?
Sam Badege
In the WNUSP G.A I was elected, I think; 1. Because WNUSP wanted to expand to every part of the world and I was a good representative, 2. I presented a relevant information responding to the assignment which I was given in the invitation, every country representative had three or four assignments "find us the magnitude of Mental Health problems in Rwanda, for example how the mental health facilities works, the level of awareness about the rights of people with Mental illness, and the psychiatric facilities, the estimated data, the mental Health situation in the country etc. the GA wanted every representative to come up with the country's situation as regards psychosocial disability or users and survivors of psychiatry, how many psychiatric hospitals, how many psychiatrists, how do you organize yourselves to get medication, how does the law protect the rights of people with psychosocial Disabilities or people with Mental illness I think I presented it well. That's what I think because I didn't campaign, I didn't do anything, but they campaigned for me and I won a position on the board of WNUSP.
Kasumi Ito
How many were you!
Sam Badege
I think in the WNUSP GA in Kampala we were around 100 or 80 something…. I don't remember well but we were many. We elected very few among Many eh!
Kasumi Ito
After you're elected as board member, did you have a board meeting?
Sam Badege
We always have online BOD meetings, once every semester or so...
We always do virtual board meetings three or four times a year, at least. At least once per semester, we hold the WNUSP board meeting. We're supposed to be having it at least once a quarter of the year. Sometimes, we skip some sessions, sometimes we do many in a semester.
Kasumi Ito
Phone call?
Sam Badege
No. Before, we used Skype, then we started using WebEx, Zoom, and other applications ...
Kasumi Ito
What did you discuss? Do you have document about the board meeting?
Sam Badege
Yeah. If I get my computer, I can have some documents to share, I am only allowed to distribute those meant for public consumption. During our meetings arrange of issues; global issues, human rights, the UNCRPD and or one time incidents and events around the world, we discuss the UN committees on the rights of people with disabilities, we update one another on local situations here and there and WNUSP supports the voices of individual user organizations, or individual users who raises to fights for their rights, we support in lobbying the states and agencies to consider the human rights of people with psychosocial disabilities when writing their policies and programs, we always add the WNUSP voice to that of international agencies fighting for the human rights of people with disabilities and we write declarations, position papers and letters supporting or denouncing, We share information all over the world and we educate people on human rights situations of our members. we stand with an individual who raises against any human rights abuse or wanting to inform the policy of their states and countries, You know, this lady from Japan is called Mari’ she is one of a kind who cannot seat down to see things going worn in Japan she always brings many exciting cases from Japan or UN for the BOD to discuss and declare its stand.
Kasumi Ito
Mari.
Sam Badege
Mari is also the WNUSP BOD and knows very well what we do as the BOD and she is good at tasking us and she has made us work on advocacy issues many times." We say, "In Japan, the law is being discussed and has gaps like this and that, lets inform them from the level of WNUSP and all of us will sign to support that.
Kasumi Ito
If it is available, I want to see the document.
Sam Badege
Sure. I will be giving some to you or you can yourself check our website archives, it is www.wnuspboard.net
Kasumi Ito
Thank you so much. After the general assembly of WNUSP, you established NOUSPR here. How did you establish the system?
Sam Badege
Oh! The system?! When I was still organizing the idea, I contacted few people whom I knew they have experience in organizing such organizations these include Mr. Kasim kayila who was the Director of Mental Health Uganda MHU, he is the guy who invited me to the WNUSP GA, joljin from Netherlands for her she came straight to Rwanda to see what I was organizing, there is another lady who was the resource secretary in the AFRICAN DECADE OF DISABLED PERSONS she helped me technically to organize the Project proposal establishing the Organization. At the grassroot level I had committed members who were growing in number day by-day and they were well organized and active, the spirit was high! Joljin sponsored three of our committee members to participate in the WORLD SOCIAL FORUM 2008 IN Nairobi, Kayila organized, together with the DSI Director the 7 days exchange visit (south to south) for 3 of the three Rwandan Users to Uganda. So NOUSPR Kicked off with that support of WNUSP and international friendship, both technically and socially we were in a position to proclaim the User, Survivors Platform in Rwanda and I was careful to follow the steps stipulated by the law regarding the establishment of NGOs in Rwanda. As regards the structures at the grass root level I did more or less like what we learned from the exchange visit in Uganda, organizing People with Mental illness in their local groups and help them to plan for their Monthly, quarterly and annual activities; when to do the outreach, revolving loan, keeping records, reporting and filing records and cases of abuse and human rights violation etc. and I could always travel around the Country introducing the NOUSPR groups to the local government leaders so that they be recognized as the organized citizens with a purpose to defend their rights and the Groups we are very much on family-based services, We follow up individuals progress light from his or her family, find him a care giver, and connect him with the nearest psychiatric unit. At the community level we encourage the group to lead an example of a good citizen, ‘’no drunkards, pay your debts, participate in the community work and most of all don’t fear to say you have a mental Health condition’’ on addition to this when we do advocacy trainings, we train two people from one family; the NOUSPR Member and his care giver.
Kasumi Ito
Regarding the study visit to Uganda, how many people went to Uganda, and who supported the travel cost of you?
Sam Badege
The entire study tour was covered by DSI. Three people including me.
Kasumi Ito
How long did you…?
Sam Badege
Seven days, we had three days touring the groups, 2 days visiting Partners of MHU in the country, I day in the office of MHU and a day off; winding up preparing our report and packing pack home. Those 7 days were resourceful to us we visited different groups of People with Mental illnesses (PWMIs), we visited Different offices and Kampala Psychiatric facilities we learned much about delivery of services and Development of policies, we interacted different classes of people light from receiving end planners and implementors, I remember we were even received in the office of the Ministry of Health Uganda.
Kasumi Ito
You went not only Kampala?
Sam Badege
No. We visited all over the country where are the MHU groups, Mbare in the east, Mpigi in central, Masaka in the west of Kampala.so we had a balanced synergy and information concerning grass root organizations and how the corroboration with the government can be build to facilitate the groups.
Kasumi Ito
NOUSPR was established as an organization of persons with psychosocial disabilities?
Sam Badege
Sure.
Kasumi Ito
How were the family members involved in that?
Sam Badege
Family members are the key players in the life of a person with Mental Health illness, you know; the healing process, rehabilitation and reintegration and or in mitigation of mental health crisis itself, so it is important to begin and continue with the family members in the whole process of supporting, the only challenge with NOUSPR is that there many members who don’t have families, so NOUSPR had to find a remedy to that challenge, one provision is that we initiated PATIENT EXPERTS or Peer supporters, Patient experts (PEs) role is to follow up on the life of a patient until he gets to supporting himself or gets the family to support him. Some family members or families become more active than the people with Mental illness themselves and you find they want to take lead of the groups. we don’t like care givers to take over the organization process we want them to support the PWMIs to be self-represented.
Kasumi Ito
How did you establish the board members or chairs?
Sam Badege
Through the normal democratic process; organizing the General Assembly and organize Elections let people elect their leaders; either by the show of hands or by secret note-writing, board positions depend on how members are positioning themselves, if a member emerges creative and convinces the audience he will win and lead, in the process, you’ll find the most creative taking the lead leaving behind those who are the most active that is the irone of democratic process in these small, self-styled groups. there are people, however who are willing to give their time to solve problems of others and they don’t easily get discouraged by such maneuvers, so if you want to build a credible organization you need to keep closer to them and must be recognized in one way or another. There is also this stage where the Organization embraces opportunities; when opportunities; say employment opportunities, vacancies, funding etc. then you will hear diverse opinions, stories, comments, criticisms and attempts to change the whole trend towards the opportunists, this is where NGO Politics begin and you will hear funders dictate terms on you “we only fund people whose leadership is structured in this way or that way, would you help so and so to be on the BOD?”, it will fit our policy if you change this article..” then you begin reversing everything in accordance with the funder’s interests, through the process Members’ vision is comprised and the organization is nor more defined for them, but because it gets funding and the few who are ready to compromise the organization’s original objective for the pay it is thriving and it shifts from actions to rhetoric; nice colorful reports, imaginary presentations, smart arguments represents an image of relevant organization, but in the real sense Most of these Organizations; particularly disabled Peoples’ organizations(DPOs or OPDs), are there, formed mainly for the few who are obedient to the voice of the selfish funders or funding agencies. (Not all the organizations are selfish by the way, let be misquoted, it may not even be found anywhere in any organizations’ policy) But that is the general practice ? exploitative tendances! I have been in the disability, NGOs sectors, I have seen hundreds of African Disabled persons dedicating much of their life time to witnessed and That is why You find, in Africa-in Rwanda the Organization of “Users and survivors of Psychiatric services” it is in a language that 95% of the population can’t pronounce! which psychiatric services? How did people survive it? This is madness! The system is only for people who want food, it’s not for people who want change! In fact, when you are identified as a nationalist and you are not smart you get sidelined. Eh! -this topic is long and debatable, let us save it for another time.
Kasumi Ito
Yeah. In 2007 or 2008, you got support from the DSI?
Sam Badege
Yeah! With the support of MHU I secured funding for exchange visit to Uganda (south to-south funds) and we gained a lot of knowledge from the visit, thereafter I drafted a project proposal to raise funds for the start of the organization, I begun submitting here and there to different funding agencies and eventually some said "Okay, this proposal is fine we shall fund this much and that is how the organization kicked off, with in the country we got a very good partner called VSO RWANDA, VSO is a UK based organization which provided technical knowhow to NOUSPR through volunteers and sometimes you get a volunteer who turns a personal friend and you can continue working with them even after when their volunteering time it is in that way that I met David McCabe who contributed tremendously to the development of NOUSPR we moved together from informal to formal stage and we started applying for funds through competing and biding.
Kasumi Ito
Did you visit to other area?
Sam Badege
Yeah! Travelling opportunities were available for me and other members of NOUSPR, we were able to travel in many parts of Africa, Europe, Asia and USA. I was in Japan in 2011, I spent about five months there, that's where I learned some Japan’s words like ohayou-gozai masu. Alighato gozaimusu, Genki deska, and many other words! ahh. I also had the opportunity to meet Madam Mari a very outstanding WNUSP board member and strong human rights activist, she later on connected me to other great activists like OH ‘Yong, and others..
Kasumi Ito
How did you get the members from the village area other than Kigali? [53:13]
Sam Badege
One of the best ways to Mobilize people with common social needs is to go through the existing local government structures, at first I did not exploit this because I was new in the field, but this is one way I used to form Groups, another way is through awareness raising on Media of different kinds mainly Radio and TV, Publications and writing, promoting role models and sending announcements or declarations in various Organizations. For example, you send with some questionnaire guidelines to churches, mosques and or local administration and people will feel them and when you get them back you find you are already in touch with active members, with interesting stories and they will ask meeting you either in your office or asking you visit them down there in the village and you will gain much in as far as strengthening Membership is concerned!.
Kasumi Ito
How about Psychiatric facilities?
Sam Badege
Yes, psychiatric hospitals are mainly visited for Medical purposes, when Members are visiting hospitals they learn a lot and it is another source of networking with people with mental health care givers and Service providers, the Ndera national referral Psychiatric facility is one of the partners that we work closely and they are very helpful to us particularly in terms of Medical support of our people, Ndera shares relevant data on different types of mental illnesses, which one is most prevalent and the new types of psychiatric drugs, reasonable accommodation etc. but definitely ours is a social approach it is not a medical approach, that is why we criticize their way of handling Patients and we argue them to listen to them, let them make their own choice and they shouldn’t be dictated upon.
From the stories, we gather from patients and how they get mistreated in the hands of psychiatric nurses we ask the government representatives to talk about it and discourage it in the meetings which we organize for advocacy and together we lay strategies where then we ask "Where do you think NOUSPR can intervene?" then urge them to join our grass-root groups.
Kasumi Ito
When you went to the local government. Do they welcome you?
Sam Badege
Yeah, sometimes you need to devise your own means of approach, make personal friendship, participate in community activities, support community initiatives then the local leaders will recognize you and services and partnership will be easy, involving local people in planning also is of great advantage because they will push the leadership by themselves, all the huddles are involved when each has their own plan and all contributes to one national plan, that is the secret. and You don't take it as a rule that you come and present Influencing change from the grass root is the relevant long-lasting change.
Kasumi Ito
I'd like to know, when you registered NOUSPR in NUDOR, how was NUDOR established? You get involved in there.
Sam Badege
The National Union of Disabilities Organization in Rwanda NUDOR, in short is meant to be a platform for the voice of Disabled Peoples organizations (DPOs) the idea of forming this platform emerged as a result of deduplication of services and un identified gaps that were identified in advocacy and delivery of services to people with disabilities, single categories of people with disabilities had taken initiatives to organize themselves and form their DPOs; the DPOs for the physically disabled, the blind, the deaf, the Mentally Disabled, then ”others” as in the little People, the albinos etc. all these DPOs has a challenge of presenting their issues at one level of the Government and the few supporting international organizations in the country, so this was not the best way of presenting disability issues because the voice of one people was divided into small, insufficient volumes that is why they all of us agreed together that coming up with one platform that represents the voice of all the categories of disabilities will make a strong advocacy that is balanced to all categories. In 2010 we came together to elect the leadership of the Union NUDOR, on the side of NOUSPR, however it had not yet melted down to other people with disabilities that People with Mental Illness or people with psychosocial disabilities form another category of disability; it was a substandard moment for me witnessing leaders of the Disabilities Organizations heatedly refusing NOUSPR to register among the DPOs, ’’Sam! How come you associate us with the Mad People, who told you that Disability is Madness! We can’t accept that, take it wherever you want but not here!” it became a hot debate but it was not surprising for me to go through that for I already knew the magnitude of Stigma and discrimination done to people with “Madness”, so I mentioned the courage to explain; from the human rights perspective what disability is and the difference between social model and the medical model, the deification of disability in accordance with the UNCRPD and all that ... I insisted for days until on lawyer ? a legal officer in the Ministry of Local Government red through the UNCRPD and saw that Rwanda signed it, then he supported me and helped them to understand my point. NOUSPR got registered as a member of NUDOR and eventually I was elected as its Vice President. I compare the experience and the level of stigma done to NOUSPR in 2010 with the one may be faced by the LGBTs, in case they come to register an organization for LGBTs, I imagine people will not fear to ask questions like "How come that you associate us with the cursed people? We can't accept that, would rather leave the forum!" this is the experience.
Kasumi Ito
Finally, they accepted?
Sam Badege
Yes! Up to now NOUSPR UBUMUNTU is an active member of NUDOR and actually has blessed NUDOR with a number of funders both at country and international level.
Kasumi Ito
Did you participate in the general assembly of Pan Africa network?
Sam Badege
There have been two G.As for PANUSP since it was formed, I was there when It was formed and I was also elected as the 2nd Chairperson, the second General Assembly in 2011 I was in Japan but I was re re-erected in Absencia, then the recent one in I think in 2019, I was not even invited, I heard from informal sources that they changed the board and I am happy with that, and I am thankful to IDA and other partners who supported the PANUSP General Assembly, this is very important.
We formed PANUSP to create an opportunity for People with Psychosocial Disabilities in Africa to develop their self-advocacy in an African style and I believe this is what the previous G.A embarked on; emerging from the local to international level, not the other way round.
Kasumi Ito
You participated in the Pan African Network in 2011?
Sam Badege
Let me remind you that I said I was in Japan and it took place in South Africa Cape town, but I was re elected a board Member in my absence.
Kasumi Ito
I think also there was general assembly in 2014.
Sam Badege
As far as I can remember this one of 2014 didn’t take place. The next to 2011 was the previous one which took place in 2019.
Kasumi Ito
You're are also the board member of the Pan Africa Network when you went to Cape Town.
Sam Badege
I was a board member right from its inception and I was re-elected as board member 2011, but in my absentia. I was in Japan, actually. That time, I was in Japan but, in my absentia, they elected me as a board member of Pan African Network.
In the recent one, I was not informed because I was involved in some other activities. Currently, here, I'm now in a wider organization (I mean wider in scope) called Actors Rwanda, which is working on skills development of all the disadvantaged youths and I have enabled over 45 youths with different kinds of disabilities to participate in skills development trainings, among those there are 9 young men with Mental Health Conditions graduating soon when they have acquired employable skills. This organization. so, this way I am also serving the Movement,
The overall purpose of ACTORS RWANDA is to encourage TVT training centers to have accessible plan for trainings of different employable services and Materials. We write concept notes, position papers and give advises to inclusiveness referring to the UNCRPD, Rwanda Disability Policy and District Development plans. We started recently but so, far so good. Its also my personal initiative and as I speak now 7 guys have joined me.
Kasumi Ito
Thank you and When did you start the forum before Actors?
Sam Badege
It was way back during COVID-19 lockdown. The covid control measures were not considering people with Disabilities, they really suffered in their homes and some starved in their houses, there was no means for them to get at the Market and those who didn’t have personal assistants faced it rough! So, we were looking at how to convince the police to put have special consideration for people with disabilities and eventually it was passed that any vehicle that has a moving pass shall be assisting to get a person with disability where he wants to get, it was not binding but somehow it helped. We went on thinking and pushing for better and special conditions favoring people with disabilities. for example, if in the village they say "Stay home! Only those who go to buy food from market will bring it home and stay." then we would say to anyone nearby that ‘’look hear there is someone with disability who lives near you, in 5 kilometers away from the market, please keep helping him, and during the food distribution we could register even those who are not disabled but helped people with disabilities during lockdown, with incentives and their kindness the local population did a good work. guys whom we took the initiatives together thought that our advocacy shouldn’t be limited to people with disabilities only, and they said look hear ‘We are doing a wonderful job but raising awareness amongst ourselves without penetrating our society cannot be more effective. Let us make a forum that is for everyone and is having all the aspects that respects the rights of people with disabilities’’ and so we formed a forum called ‘’ACTORS’’ we went on with it, we started moving about doing the accessibility audit in all the training centers; auditing tools, materials and buildings and we managed to convince some TVTs to include in their programs inclusive training in various courses; ICT, Garments production, carpentry etc. and basic skills in graphic designing and film production which we specialized for people with Psychosocial disabilities.
Kasumi Ito
Training center.
Sam Badege
Today; because the government is now having a target of reaching, at least 80% of the youth with employable skills in Rwanda, we are set to make the program fully inclusive such that the Youths with disabilities can also benefit from this opportunity, and among the means we use there is integrating individual youths with disabilities in every training center. Our role again is to remind the planners and monitor the implementors on how inclusive ness is planned and implemented.
So far we have ver 13 training centers within the city of Kigali and 18 others outside the city which we are running the program together in ICT, agriculture, handcraft, welding, carpentry etc.
Kasumi Ito
The forum mainly composed persons with disabilities?
Sam Badege
No, composed of people who understand inclusiveness and accessibility, that is what we look at, they are they are therefore both disabled and non disableds.
Kasumi Ito
How did you find such people? How did you mobilize?
Sam Badege
There is one person. He's my friend, and we also went together in Japan. He's also leading a DPO, a disabled people's organization. He picked the idea so quickly, and we came together, organized others. We held short conversations with our friends whom we knew are not disabled but well versed with the disability field and we build the team like that, we wrote our program, then we lobbied to meet the concerned directors in different Ministries and submitted it. We had a meeting with many concerned officials and they welcomed our idea. I will send you a draft proposal of the same.
Kasumi Ito
Thank you.
Sam Badege
They were very happy.
Kasumi Ito
How many people are your organization now?
Sam Badege
We are, so far, seven. This one, we selected the most experienced people and people who know what they're doing, professionals, and people who are willing to give time for others to benefit.
Kasumi Ito
Do you do that work voluntarily?
Sam Badege
Yes, we started as volunteers but, soon, we shall be getting something out of it. Allowance, fees or something. we're still volunteering. Actually, the team is getting ahead, It's moving steadily and Many people are now referring to us as role models in advancing inclusiveness. We are busy receiving phone calls from here and there..
Kasumi Ito
Can you get salary from that?
Sam Badege
We may get allowances, not salary. We may get small allowances, travel allowances, communication, consultation fees. like, if a training institution wants to write its plan on including people with disabilities in their training sessions and they ask me to write it for them, I will be paid for the work but minimally in comparison to other consultants. It is not every one that can design the type, determine the level, the type of reasonable accommodation needed by trainees with psychosocial disabilities for them to comfortably undertake the course and finish it.
Kasumi Ito
Thank you so much for your information.
Sam Badege
You're welcome, Kasumi. Thank you too.
Kasumi Ito
Do you have something to add?
Sam Badege
No. Maybe it's my turn to ask you questions.