“…and yes, you have to be loud and passionate about it”- Rose.
Hello readers, welcome to series 16 of the narrative of champions in the disability space.
In this issue, we were happy we could take the champions’ narrative to far away Rwanda (the country of the infamous genocide of 1994). Anyway, the genocide is now in the past. So what about Rwanda? One can say the omens are today auspicious. Like the proverbial Phoenix, Rwanda has made breathtaking transformations from the ashes of its ruin decades ago and now is a beautiful country with a pleasant climate and diverse landscapes – brimming with hope and optimism.
I connect with Rose Umutesi, a Disability Justice Project Fellow and rights activist from Rwanda. Rose who has psychosocial disability is a leader in a number of organizations for persons with psychosocial disability in the central African country. She is that beautiful face and that vociferous voice in the fight against stigma and discrimination against persons with psychosocial disability – starting from her native Rwanda. Rose was a propelling force behind the introduction and eventual signing of the African Disability Protocol (a human rights treaty that addresses discrimination against persons with disability in Africa) by the Rwandan Ministry of Justice.
Loud and passionate about the cause
It was a delight chatting with Rose over the phone – her amiable persona palpably radiating through a strong Kinyarwanda accent (sometimes kinda getting in the way) as she tells her champion’s story of rising from the rubbles of non-identity to discover and build a powerful self and sense of purpose in a disability that many loath to be labeled with.
As I interacted with Rose, I couldn’t help admiring her infectious openness (occasionally bordering on what I call calm vulnerability). She comfortably identifies with her psychosocial disability status – a range of conditions that impact a person’s mental health and social functioning – often getting in the way of a person’s ability to interact with others, manage daily activities, and engage in meaningful relationships. It was interesting observing how the big, cheery Rose goes all out identifying with and advocating about a disability that is little recognized in society – with many living in denial as it’s often erroneously linked with being mentally ill. For Rose, the journey to disability activism for the reduction of stigma, discrimination and torture of persons with psychosocial disabilities formally started in 2005. Since the genocide of 1994, a sizeable number of Rwandans had developed post-traumatic stress disorder and other mental health conditions related to the genocide.
Here was a country whose citizens were prone to a particularly insidious condition which no one seemed to be taking note of until Rose came to the scene. Little wonder then when her country’s Ministry of Justice signed the African Disability Protocol, she was almost jumping and shouting “Wow! At least I have done something to my country. At least I have done something to my people, to gain their right”
I ask Rose to tell readers something about herself – family background, early years, her disability and the cause(s), etc.
1994 and thereafter, A tale of Identity crisis and trauma
I’m Rose Umutesi. I was born on 23rd March, 1985. I’m a Rwandis by nationality. My nickname, Koromi Tibaya drew from the circumstance I was born in. Tibaya (Rose draws a smile with the pronunciation) indicates my rather big size right from birth. Then there was that loud, round voice and the face that kinda looked… agreso (aggressive). So I was nicknamed Tibaya.
Perhaps she lost them to the genocide. Rose’s recall of her family background while growing up is rather vague – She talks about having no father, no aunties, no uncles, no sisters. “But I had my grandmother who was always there for me, Rose says with obvious relish. “My mother, she wasn’t there when I was growing up. She was in another province”. Fortunately for the young girl, between grandma and her mother she had a fine childhood right up to the genocide. This provided a lasting bulwark for the storm ahead.
Uncetancuses…
Probably the Kinyanwanda word for psychosocial disability. For Rose, it’s been three decades of having the shock of the genocide impede with daily living. She draws a more concrete picture of the cause of her disability in the following words: “Of course, it was caused by such issues as not having an identity. I was asking myself all over why is it that I don’t have a family? Why don’t I have a father…and so on”. Then when you see what happened in our country during the genocide, how it caused a lot of trauma, a lot of depression, major disorders, etc, you begin to understand the attendant chaos. That is when I got this kind of depression and other related factors which built into a strong psychosocial disability.”
With hindsight’s benefit, Rose throws more light on the subtle nature of her disability and how she was able to come out on the strong side – thanks to maternal love:
“In childhood, you don’t feel any kind of pain but when you just grow up, when you add one year, that means you are growing older and start thinking a lot, getting your definition of self – your identity. You start by thinking and asking: ‘why is it so and so? why am I getting these challenges?’ Luckily for me, in my early stages, I was very okay because my grandmother and mother (who though far away) were trying to see that I was very happy and getting what I was supposed to get.”
“A mother is she who can take the place of all others but whose place no one else can take.”
Education, Work and Coping
Her journey through the halls of learning – secondary, university was a rough one given the nature of her disability and its interference with social surroundings. Fortunately Rose had this “people-oriented personality” which kind of put her on right footing. But there was a price – overcoming always has it. For Rose, a bit part of that was forcing herself to comply despite her disability – she has got grit!
She says: “I forced myself to comply. [that was how] I graduated from the American university in 2019 [getting] the best aggregates like any other person who doesn’t have a psychosocial disability”. Her university experience had a big positive influence towards managing her disability, there she met some very considerate people and also learned not to keep wrong things in my mind.
Enter career life, with rather unsavory experiences:
First, a teaching stint, and Rose later worked in a community bank for some 4 years. She loved the banking job however despite her best efforts to meet job demands, colleagues and boss found fault with her input. The reasons couldn’t be divorced from her disability which no one seemed to understand or cared to – after all she was being paid..
“My boss was abusive and made amorous advances. He would shout at me and threaten I would be sacked unless I gave in to his demands”, says Rose. I stood my ground.
Eventually Rose was relieved of her employment. Broke, without a job, and near despondent, she went into deep introspection trying to figure a way out of the mess. She decided to start a business from home. ‘It wasn’t easy’, she recalls. “There were many naysayers, many didn’t believe I could make it but I held on”.
Her Persistence Pays Off…
Things moved slowly and then fast after that brave decision to be in charge of her space.
“I attended an international conference for leadership [which got me] disability active. [I started having ideas of things I could do] to help people who have been discriminated against and to remove their barriers”. This marked the beginning of purpose discovery for Rose.
“I started [my] organization, the National Organization of Users and Survivors of Psychiatry Rwanda (NOUSPR) in 2005, got offices in 2007 and got registered in 2014”.
The organization was formed with the goal of fighting the stigmatization of, and discrimination against people with psychosocial disabilities in Rwandan communities.
The journey so far… You have to do the hardest thing
Rose’s bubbly exterior can easily mislead the casual observer to think that her journey has been rather smooth sailing. This prompted me to ask how the experience has been. Her impassioned response hints at searing scars hidden beneath the smiling surface of a determined soul whose triumphs were earned the long, hard road:
“Once you get mental illness, it means you are finished in the community. They don’t consider you any more like a person who is useful to the families”. She went through all that and more, pulled through and now uses her experience to challenge others.
“Mastery in the journey of disability is not easy. It needs different hands, support [and] community to know how people with disability are coping , performing, pushing, experiencing and removing stigma. Sharing my experiences help other people with disability to learn and it is like pushing one from one place to another. Talking about discrimination and coping strategies, I can say you have to be loud and passionate. Don’t be scared of who you are. You have to do the hardest thing. You have to work hard. You have to show that their thinking about you is different. You have to teach them that with barriers and discrimination, people with disabilities can live and do things people who don’t have a disability do. That is all I use my mind and brain to do, she reiterates.
Favorite Philosophy and Quotes
“I shall participate, I shall contribute and in so doing I will be the gainer”.
With those words, Rose captures the spirit behind her brand of disability activism – a active participation and involvement as opposed to a lethargic inclusion. And she urges same on other persons with disabilities when she adds: “And of course, show them your capacity…, show them the way you feel that they can do things. Don’t stop there – show them that you are a person like any other”. She believes “we will fail when we fail to try, and that success is not final, neither is failure – what counts is the courage to continue. How about it if they don’t respect you, she asks. “well, that’s up to them, she admits, but [then it’s equally up to you] to show them [by] the way you respect yourself.” This is what I use in my daily life, says Rose.
Pains and Hurts
We have all had them (those soft cuts) in connection with our disabilities. But some go deeper and leave lasting scars. For Rose, one such experience involved ‘matters of the heart’. She recalls:
“There was a time I was in relationship with someone and the family told him: ‘look, how can you bring such a person to our family?’ They were like ‘if you try to get someone, does it have [to be someone with this disability?”. Needless to say, the young lady was distraught. But she had to reach a bold decision – to move on with her life, to be comfortable in herself and identity and to look above.
Building Character Through Disability
There are ways in which a disability and the hurts that come with it help people build character and discover hidden strengths. Rose is very loud about how the challenges of her disability have built her faith in God and belief in herself. She’s definitely talking from hard won experience when she says this.
“I feel strong and full of hope. I am very much proud and ready ‘to’ fight for the right of persons with psychosocial disability”. Rose shares how her disability and advocacy work gives local, national and international exposures – all of which add up to where she is today. A privilege she uses to stand up and fight for those [less privileged]. Rose passionately goes about the task of helping them understand their own rights. As she puts it: “our tool is to know our rights, to say how we feel and to show that we are able”.
Words of advice
‘Get education and fight for your rights’, she says. Have courage so that nobody discourages you on your way. Have a mentor who can advise you from experience; can direct you in a good way. Yes, push on, push on, as long as you’re still alive, you will reach your goals”.
So my advice is ‘never give up’. Just fight for the right. Just push on. ‘Put on your calendar [and] have plans in your daily work. Educate those who don’t understand about their disability right’.
Is disability a bad thing?
Rose’s answer to that delicate question: “there is no right or wrong way to feel defined by one’s disability or not” To her, whether that [disability] is a good thing or not is a very individual experience. “Your experience matters”, she says, “so it depends on the way you define it”.
Talking to a discriminating society – Be aware of your attitude and behavior
Her biggest concern is about the attitude of society to persons with disabilities. So she has these to say: “I can say that respect to every human being [is important]. What we need most is to see the community respecting and protecting the life of people with psychosocial disability.
Put inclusion into your daily work. Be aware of your attitude and behaviour. Respect and promote the right of people with disabilities. Provide equal opportunities for their full social participation. Establish direct contact with people with disabilities. [And] remember, no one chooses to have a disability.
[Anybody] can get one today or tomorrow. So, let us behave in treating [these] people differently. [And] if you don’t have [someone] who has a disability today, tomorrow you might have one. So, leave no one behind. Those are [my] messages to society. God bless you.”
The Disability Champions Series, a collaborative project with Madam Joy Bolarin, Executive Director, Jibore Foundation, is anchored by Ogheneruemu Alexander (Disability Issues Blogger).
Special acknowledgement to T.O.L.A Foundation for constant backup support.
Great message full of inspiration,put inclusion into your daily work ,leave no one behind