Welcome to the 17th series, esteemed readers. In our narrative, we traverse the snow-capped Rwenzori Mountains and great Lake Victoria in land-locked Uganda to the East of Africa. Uganda, otherwise known as the ‘Pearl of Africa’ is a top stop for safari activities and wildlife photography with its plethora of mountain gorillas, chimpanzees, tree-climbing lions, Africa’s Big Five (lion, leopard, elephant, buffalo, hippo), and a wide variety of bird species.
I’m on the phone doing an interview with Esther Deborah Suubi via chat. Esther has psychosocial disability – a disability that recently has been catching my attention for the disgruntled press surrounding it as ‘one of the most challenging, misunderstood and marginalized among disabilities’. My interaction with Esther was very helpful in providing more enlightenment on a disability that is often not considered one – exposing sufferers to deeper stigmatization. An advocate for young girls and women with psychosocial disabilities, Esther is also a peer educator in the communications team at Triumph Mental Health Support, where she works. Her “lived experience” has taught her the various unsavory sides of living with psychosocial disability – from external factors like discrimination, and being misunderstood, to internal ones like episodes, depression, lack of self-esteem, and attempted suicide, among others. This, she says, makes her believe she’s here for a reason – a reason that translates to a firm resolve, in her own words: “I decided to stand up and fight for my fellow girls/young women by speaking up so that we are heard, many girls and young women are out there suffering and can’t speak up but [that] won’t keep me silent”
Let’s dive into her story. As usual, I begin by asking Esther to give some insights into her background – family, growing up, disability, and related experiences.
Family Background/Growing up
She talks about family sparingly but there was love though the young girl was largely misunderstood. It all comes to the level of enlightenment available at each stage of the journey.
The last child in a family of four children, Esther uses “weird” to describe her growing years. She struggled with a bad temper and her family thought it was just one of those “childish stages”. But when the tantrums persisted beyond normal, it became obvious something was wrong. Unfortunately, at that time, the family had no enlightened information on what should be done.
She recalls: “I was placed under the sanguine temperament, which made me hate myself so much because people close to me defined having a short temper as something bad and it broke me”.
Diagnosis: The moment of truth
It wasn’t until she turned 19 that Esther was diagnosed with Major Depressive Disorder and Bipolar (some eight years after the first symptoms). Initially, the young girl struggled to accept the reality. “But then, it also helped me put the puzzles together and understand why I was “weird” unlike other young people my age”, Esther admits.
Then the African socio-religious stereotype kicked in to make the adaptation process all the more difficult for the young girl. A family member was against medication, insisting rather on prayers to make her whole again. Further, society’s negative perception towards people with psychosocial disabilities didn’t help as Esther suffered episodes and relapses.
Discrimination
At her rather young age, Esther bears lingering scars from brushes with discrimination that even veterans will wince at.
“In primary school, I was bullied – which worsened my psychosocial disability. In high school there was so much discrimination – pushing me into the introversion I find myself today. My medication was causing me to gain weight which made me really uncomfortable with the snide remarks from people. I had to change schools after four years to complete the remaining two years of high school for no other reason than to be in an environment where people hardly knew who I was.”
The accumulated discrimination the young girl faced while at school and at some facilities where she sought help demoralized her to a point she no longer saw reason to exist. She highlights one particularly hurtful encounter: “At a women’s health facility I went for information on Sexual and Reproductive Health Rights, attitude of staff toward me changed when they realized I had a history of depression.” I was looked at like someone who understands nothing…which left me disjointed…”.
At the height of these external pressures, Esther recalls harboring suicidal thoughts and even making actual attempts.
In time, she learn a vital truth: Discrimination comes with the terrain, and finding coping strategies is the answer.
Finding Support To Coping At TRIUMPH – A testament to the power of disability organizations
Esther was fortunate to have a family that took pains to ensure she got all the help/support she needed. Through family, she connected with disability organizations that helped build her deflated self-esteem. Notable among these was the Triumph Mental Health and Support – a not-for-profit dedicated to promoting recovery, building resilience and investing in social networks for inclusion of persons with psychosocial disabilities.
Welcomed with open arms, Esther recalls that it was at TRIUMPH that she got the push to stand and speak up as a voice for psychosocial disabilities. An internship at TRIUMPH offered her opportunities for self-discovery. She had found a matching platform to practice a mass communication discipline she studied at university while raising awareness on disabilities with a specific focus on psychosocial disabilities. All these, and more added up to big strides to rehabilitation for the budding champion. She gives a glimpse of the TRIUMPH impact in the following words:
From hiding behind dark glasses to speaking up for social change
“When I joined Triumph Mental Health Support, I attended trainings on how to cope up with psychosocial disabilities and also having safe spaces which built my self-esteem. I began to exercise speaking up which earned me compliments of being ‘confident’ not knowing where I had come from (the lowest ebbs of self-confidence) but it encouraged me to continue advocating. I had the opportunity to present a policy on the Sexual and Reproductive Health Rights (SRHR) of women and girls with psychosocial disabilities which moved the leaders to commit to support and ensure that women and girls with mental disabilities are not left behind”.
It’s not a mean feat for some who use eyeglasses as confidence boosters and couldn’t look people in the eyes because of low self-esteem.
Clearing misconceptions about mental disabilities
From a general standpoint, society’s ideas of mental/psychosocial disabilities have been hazy and rather stereotypic. As this is clearly an issue of concern to the advocates, I ask Esther some core questions coming from these stereotypes. What are telltale signs of mental disabilities? Are these people violent? Unsociable? After all lived experiences provide the best of enlightenment.
“People with psychosocial disabilities are not always violent. Most times, the violence might come in when in a crisis, and this is because they do not understand what is happening to them like the voices or they feel it is the safe way to protect themselves. The assumption of laziness is also not true. We people with psychosocial disabilities do go through some episodes that make us fail to carry out day-to-day activities like brushing teeth or bathing, and yet it seems easy to do.
“So when people don’t know, they will conclude that this person is lazy, etc. And part of being antisocial, sometimes, they need to be alone. Personally, I am an ambivert, I am a bit of an extrovert and more of an introvert. [However] not being social doesn’t mean we don’t want to socialize, [see] it is a psychosocial disability and invisible, so there is a lot that one is battling with that isn’t seen”.
Her Favorite Quotes
Quotes have always served as guiding compasses and energizers for travellers on every course. Esther says the following lines are her favorite for navigating the thorny path of her disability:
What mental health needs is more sunlight, more candour and more un-shamed conversation,” Glenn Close.
“I am the same person I was before I got the mental disability”.
“There is hope even when your brain tells you there isn’t” – John Green.
“You don’t have to control your thoughts, you just have to stop letting them from control you” – Dan Millman.
And she uses these to extend sundry admonitions to others on a similar curve – and to society
Parting Shots
‘You are your number one fan’, Esther reiterates, ‘so if you don’t look out for yourself, you can’t look out for others.” ‘Always speak up and ensure that you are heard.” Asking for help doesn’t make you weak.
‘Disability is not a curse or a burden, it means that you are a person with special needs but you are still a human being like another person.”
To a society that discriminates: ‘Always treat people the way you would want to be treated if you were in their shoes or in a similar situation.”
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 back up supports.