Whole. As I Am
It has been three years since I lost my ability to talk audibly following an emergency tracheotomy and repeated surgeries in my upper larynx that left my vocal cords slightly paralyzed.
It seemed, for a while that every surgery did not only remove a piece of imaginary papilloma the doctors saw obstructing my upper airway, but it also chipped away at my self esteem, my confidence and my pride as a woman. Every time I woke up after yet another surgery and opened my mouth to make a sound and nothing was heard, I died some more.
As I waltzed through the stages of grief alone, I found myself stuck at DENIAL. I denied the obvious – that I could not speak audibly and needed to learn sign language to communicate effectively. That some of my friends I had known for years prior to when I became ill truly cared about me when they called or dropped by to see me. Worse yet, I denied the glaring reality that I was in a very abusive relationship and needed to get out of it immediately.
There were days when he would make remarks like “I am the only man who would ever date you. You should be grateful I am even introducing you to my friends,” and “You think those friends of yours (referring to some of my old friends who stuck around) really care about you? They just want to see you and have something good to laugh about.” He would then go ahead and taunt me by saying “Go on and leave me, let’s see how far you will get.”
He was not the only one who shared these sentiments. His family did too. I recall a day when I overheard some of his family members say, “I wonder what he is doing with her when there are a lot of whole women out there, She cannot even talk.” But I could talk, not just audibly. I desperately wanted to tell them that, I wanted to make them understand that I could talk. My attempts to prove this to them proved futile. They hated me regardless, not because they felt I was a bad person or a bad influence on him but simply because they felt I was not a complete woman.
I believed all these things. I believed every one of them and there were times I even thanked him for being with me. I considered myself fortunate to have him. I gave him more power over me and he utilized this power very well by graduating from verbal, psychological and emotional abuse to physical abuse. He even hit me in public.
What I felt, is not alien. It is something many women around the globe – disabled or not experience. From the well paved streets in highly industrialized cities like New York to the sleek Catwalks in Paris to the impoverished villages in developing Africa. The feeling of inadequacy, of low self-esteem is something that many of us can relate to. Often times, people take advantage of this ‘opening’ to hurt us where we are most vulnerable, feeding our feelings of low self-worth and enslaving us into depending on them even more.
This situation is especially bleak in developing countries where women with disabilities have almost no access to equal opportunities especially when compared with their male counterparts who are disabled or to all men and women without disabilities. This is due to gender inequality and discrimination and stigmatization of people with disabilities. And, in all fairness, if the government - whose duty it is to protect and preserve the rights of every citizen and make it possible for everyone to fully enjoy these rights as enshrined in the constitution displays a cavalier attitude about it, there is only so much individuals can do.
Let the figures speak.
Human Rights Watch (HRW) reported in 2009 that; an estimated 300 million women around the globe have disabilities, ranging from mental illness to physical disabilities.
Women with disabilities make up the 75% of all people living with disabilities in developing countries.
Women and girls with disabilities are twice as much at risk of experiencing human right abuses and violence because they are often isolated and highly dependent. This prevents them from engaging in social interactions, receiving formal education (with the literacy rate for women with disabilities as low as 1 percent, according to a 1998 UNDP study), learning a vocation and earning a living. This leaves them in a state of perpetual poverty, dependency and entrapment in abusive intimate relationships. Little wonder the unemployment rate for this marginalized group is 74 percent according to Dawns Ontario fact-sheet on women with disabilities.
Aside from poverty, illiteracy and unemployment, some of the other equally pressing problems women with disabilities face are: sexual abuse; forced sterilization and female genital mutilation Disability Awareness in Action reports.
According to another small 2004 study in Orissa, India, almost all of the women and girls with disabilities were beaten at home, 25 percent of women with intellectual disabilities had been raped and 6 percent of women with disabilities had been forcibly sterilized.
Human Rights Watch also reported that women with disabilities are subjected to marital restrictions, involuntary abortions and forced relinquishment of their children.
Some of the perpetrators of this violence are family members, neighbours, intimate partners, and peers; even caregivers in cases where these women are institutionalized.
Bringing It Home to Nigeria
Nigeria is rife with cases of abuse and violence against women with disabilities.
Starting in the woman’s family which often blames the woman for her disabilities and is looking for someone; anyone to be her partner in order to relieve her of her need to care for herself. In many instances the intimate partner then sees the wife as a lesser being who he can treat anyway he chooses.
Many people hold the belief that a woman with a disability is fortunate when she finds a partner. Some women with disabilities with whom I had the opportunity of speaking as I researched this article, said their parents always admonished them in the strongest of terms to do everything possible and to endure whatever they face in their marriages simply because they feel relieved that the women were finally ‘off their neck.’
Esther, who made me promise not to use her real name, has been forbidden from having her own babies. “My husband doesn’t want me to transmit my disability to his children. So He married another wife who has borne his children. Yet he still uses me for sex, as punching bag and for house chores,” She says.
You may argue that with organizations like Sexual Assault Resource Centre (SARC) strategically located at the Lagos State University Teaching Hospital (LASUTH), women should not experience these abuses in silence.
The rationalization for that argument may lie in the fact that, for a group that has been as marginalized and underrepresented as women with disabilities have for so long, taking advantage of these services may not be an option.
Ms Sarah Akinola, the National Women Leader, Nigeria Association of the Blind and the founder of Willing Hands International, has been working with women with disabilities for the last eight years and had this to say “Most of us don't know of any counselling services except those we get from fellow disabled women.
Of course, if they know any, they are likely to shy away from them because of stigma and low self-esteem.”
Even though SARC has no documented cases of counselling and rehabilitating disabled women, I was both reassured and relieved to learn that they are open to EVERY WOMAN who has been a victim of rape/sexual abuse as a staff and the Center Manager confirmed to me when I visited the center and via email correspondences.
The Way Forward
Despite all of these obstacles and a clear lack of support, I and many other women with disabilities have empowered ourselves. Thus, this may be a key to ending the menace of abuse of women with disabilities either in the family setting or in intimate relationships.
My opinion about myself started to change after I made a conscious effort to educate and empower myself with correct information both – online and offline. I also started to speak out and I began to seek out and connect with other women facing similar abuses. This helped me cope better in the university and it also gave me the needed strength and courage to leave the four- year relationship of abuse.
Women with disabilities must be encouraged. They also must be given the necessary assistance in acquiring awareness and education at all levels. Invariably, this will increase their chances of getting a job and earning a living. The effect awareness and education has on their self-esteem cannot be over-stressed or underestimated. In addition, there should be scholarship opportunities for women with disabilities.
Rehabilitation, counselling and a feeling of connection to other kindred spirits is also very important for helping women with disabilities to heal and move on. Rukiyat, married to an abusive husband and living with a physical disability says “Knowing that other women with disabilities are having similar problems in their marriages made me feel like a woman again. Even though I now know it is not a normal thing to be abused, I also know that I am not in it alone.”
Ms Sarah, mentioned earlier thinks the best way to prevent abuse is the use of socio-economic empowerment of women with disabilities.
The example of Blessing who has a physical disability reiterates this fact.
After receiving a loan of five hundred thousand naira (about five thousand US dollars) from the World Bank, She started a tailoring business that allowed her to leave a 15-year-old marriage where she endured starvation, beatings, marital rape and psychological torture.
This is further backed by research. There is evidence that thousands of persons with disabilities have been successful as small business owners, according to the U.S. Department of Labor. The 1990 national census revealed that persons with disabilities have a higher rate of self-employment and small business experience (12.2 per cent) than persons without disabilities (7.8 per cent) - UN.
The overall goal is not to discourage women with disabilities from being in relationships or getting married. Rather it is to:
1. Re-orientate them and the general populace - starting from the family unit and going to the larger civil society into a greater awareness that women with disabilities are humans first and as such, it is everyone’s moral and ethical duty as individuals to be of assistance to each other;
2. Empower women with disabilities with education so that they better understand and demand their inalienable rights and thus can increase their chances of getting a well-paying job;
3. Provide women with disabilities with information about walk-in centres where they can connect, talk about their abuse and heal alongside other women;
4. Empower women with disabilities economically to discourage dependence on intimate partners and family members who may be perpetrating these abuses and promote their self-reliance and dignity.
Even as I share my story, I do not consider it as bravery because in truth I feel naked, I still hurt; I still remember every word, every look, every slap. There are times when I blame myself for all that happened and it hurts all over again. But this is therapy for me and it is about taking the power he has over me back. It is about taking all the pain and making it into this beautiful thing; giving it life and breath – like a bird eager to soar. I refuse to let him or anyone else hurt me anymore. I am WHOLE as I am and I will not apologies for that.
This article is part of a writing assignment for Voices of Our Future a program of World Pulse that provides rigorous digital media and citizen journalism training for grassroots women leaders. World Pulse lifts and unites the voices of women from some of the most unheard regions of the world.