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WEI is excited to take part in this year’s Conference of States Parties (COSP) to the Convention on the Rights of Persons with Disabilities (CRPD)* —the largest annual global gathering of States, civil society, UN agencies, and other actors dedicated to ensuring disability rights. After two years of virtual meetings, we will be returning in part to the United Nations Headquarters in New York —our first time back since 2019— while also hosting and co-hosting several virtual side events from June 13 to 17 for our entire global community.
For this 15th session of COSP, the overarching theme is Building Disability-Inclusive and Participatory Societies in the COVID Context and Beyond. Subthemes include Innovation and Technology Advancing Disability Rights; Economic Empowerment and Entrepreneurship of Persons with Disabilities, and Participation of Persons with Disabilities in Climate Action, Disaster Risk Reduction, and Resilience against Natural Disasters. It is imperative to have the voices and perspectives of women, girls, and gender minorities with disabilities on each of these topics, and so we are energized to haveWEI team members, together with partners and advocates on the ground to ensure we have a seat at the table.
Please also join us online for our side-events!
1. Generation Equality Comes to CoSP: Ensuring the Participation of Women, Girls, and Non-binary Persons with Disabilities in Advancing Gender Equality
What: Women, girls, and gender minorities with disabilities are an essential part of the movement for women’s rights and gender equality. The Generation Equality movement is working to accelerate gender equality through 2026, and feminists with disabilities are an imperative part of this work. Join the Generation Equality Action Coalition on Feminist Movements and Leadership to find out more about the Generation Equality process and how feminists with disabilities can be involved. When: Monday, June 13, 10 am to 11:15 am (EDT) Where: Zoom – Register here.
2.Equal Rights for Women and Girls with Disabilities: Leveraging the Power of Innovation and Technology to Ensure Access to Sexual and Reproductive Health and Rights
Co-sponsored by UNFPA, Finland, and WEI
What: Join the Permanent Mission of Finland, UNFPA & Women Enabled International for a rich discussion on good practices from around the world on leveraging the power of innovation and technology to ensure access to sexual and reproductive health and rights for women and girls with disabilities. When: 16 June, 08.30 – 09.45 AM (EDT) Where: Zoom – Register here.
3. Using Technology to Bring Together Women and Gender Minorities with Disabilities during the COVID-19 Pandemic
Co-sponsored by WEI, Canada, CREA, and Disability Rights Fund
What: Join WEI, CREA, Disability Rights Fund, and the Government of Canada for a CoSP15 side event where gender and disability rights advocates from around the world will be discussing the ways in which technology brought them together, the challenges it posed, and the good practices that remained. When: June 17, 10 am – 11:15 am Where: Zoom. Register here.
It’s official: the U.S. Alliance of Women, Nonbinary Persons, and Other Gender Minorities with Disabilities has launched! Following months of research, community organizing, and steering meetings spearheaded by Women Enabled International, a diverse and dedicated group of feminists with disabilities in the U.S. has formed an Alliance to advocate on the critical human rights issues that affect the lives, experiences and opportunities of our community in the United States.
WEI hosted a March 11 virtual gathering that was part launch event and part happy hour. In addition to formal remarks about the Alliance’s initial priorities and reflections on the process of building the Alliance, there were fun activities and socializing. Through a unanimous vote, members selected WEI to be Coordinator of the Alliance for the first three years.
During a ‘scavenger hunt,’ Alliance members shared items connected to the disability rights and justice movement, which included voicing hopes for the Alliance, introducing service animals and pets, and recommending favorites. One-member shared Disability Rights Activist Laura Hershey’s resonant poem “You Get Proud by Practicing.”
The event culminated in a dance/listening party with a playlist compiled by Alliance member Shameka Andrew, featuring anthems and rallying cries such as: “Talkin Bout a Revolution” by Tracy Chapman, “Warrior” by Scandal, and Cheryl Crow’s version of the Beatles’ “Here Comes the Sun.” The YouTube playlist included lyric captioning for each song to ensure that the music was accessible to all.
By all accounts, the event was a success, and the community is energized. Here is what they had to say:
“I’ve been part of the disability community for a while and I’ve never been a part of such an intersectional group of women. I’m really excited about that and I’m really hoping that we’re able to start some real change.”
Ashley Volion, Policy Analyst at Disability Rights Louisiana, who identifies as a Filipina/White with Cerebral Palsy.
“The best part about this [Alliance] and the work we get to do is since we are starting brand new, we literally get to mold it!” Jessica Jimenez, board member at the World Independent Living Center Network (WIN), who identifies as a Mexican female/gender-nonconforming person with epilepsy.
“A lot of disability-led organizations are still very top-down, and the way that this group is being developed has been led by the whole group…With this being such an intersectional group, the priorities reflect our community as a whole and not just the priorities and the goals of a small section of those with the most privilege. So that really excites me… the work that we do is going to be really in touch with what the community wants and what we want.”
Lindsay Baran, disability activist and Policy Director at NCIL, chronically ill and hard of hearing.
Understanding the situation on the ground—and the needs and priorities of our community—is essential to effecting change. This is why field research is an important tool for human rights advocates. But the pandemic upended the traditional ways in which we conduct this work.
WEI’s Pacific Project —which began pre-pandemic— includes extensive research into the issues impacting women and young people with disabilities in several Pacific Island Countries. Our partnerships in the region became even more essential when COVID-19 struck and travel to and within the region was no longer possible. Implementing field research meant close collaboration with trusted colleagues on the ground.
Now, after two years of interviews, focus group discussions, and stakeholder meetings, the results of this work are being launched and disseminated to advocates, allies, policy makers, and service providers, both in the region and to the WEI community globally.
One such groundbreaking resource documents the particular barriers that women and young people with disabilities face in Samoa (including during the pandemic). This report was developed by WEI in close consultation with our regional partner, the Pacific Disability Forum (PDF), a Samoan disabled persons organization, Nuanua O Le Alofa (NOLA), and the United Nations Population Fund (UNFPA)’s Pacific Sub-regional Office (UNFPA-PSRO).
Amongtheissuesprioritizedbywomen and youngpeoplewithdisabilities in Samoa in interviewswere:
stigma and discrimination,
limitedaccesstojustice,
no accesstofamilylifeeducation,
multiplebarrierstoaccessibility, includingphysical, and communicationsbarrierstoexercising sexual and reproductive rights and their right to be free of violence.
Women, girls and gender non-conforming persons with disabilities: Know Your Rights!
A key finding from this research is that women and young people with disabilities need access to easily digestible information about their rights—including rights during the COVID-19 pandemic. So alongside of the country-specific reports, WEI developed a Know Your Rights guide in partnership with PDF and UNFPA-PSRO and with the support of the Australian Department of Foreign Affairs and Trade.
“Working with WEI has become a very powerful experience for Mexicanas con Discapacidad,” says Mexicanas con Discapacidad founder, Maryangel García Ramos Guadiana. A longtime WEI partner, her organization recently worked side-by-side with WEI to develop and deliver a report to the UN Committee on the Rights of Persons with Disabilities (CRPD Committee) during its 26th session in March. WEI was there to support our partners and ensure the inclusion of a gender perspective throughout the CRPD Committee’s meetings.
Mexico was among the countries due for review by the CRPD Committee this session, and the report by WEI and Mexicanas con Discapacidad drew attention to the serious human rights issues facing people living at the intersection of gender and disability in Mexico. Our report also spelled out clear recommendations for holding the State accountable for ensuring the human rights of all its citizens.
The report addressed a number of issues impacting the rights of women and gender minorities with disabilities in Mexico: the importance of collecting disaggregated data on the lived experiences of women, girls, and gender minorities with disabilities, prevention of gender-based violence and access to justice for survivors, access to sexual and reproductive health and rights, the ability of individuals to exercise legal capacity, and the impact of COVID-19. Read the report here.
WEI also collaborated with Mexicanas con Discapacidad to speak out during a meeting with civil society organizations engaged in disability rights advocacy with the CRPD. We used this valuable opportunity to raise awareness of these issues and galvanize broader support for rights at the intersection of gender and disability.
Picture Of Maryangel García Ramos Guadiana at a Women’s March that reads “Sin números, somos invisibles” (Without data, we’re invisible).
“Together, we have been able to give visibility to the issues women with disabilities go through in Mexico from the eyes of civil society, this time, through our report to the CRPD Committee. This surely has given a unique and real perspective for the country’s review and provided insight into what still needs to be done for our community. Together we are more powerful, and our voices even louder.”
Maryangel García Ramos Guadiana, founder, Mexicanas con Discapacidad
Human Rights Organizations Intervene in Cases Before the European Court of Human Rights on Poland’s Abortion Law
26 January 2022 – One year after the ruling of Poland’s discredited Constitutional Tribunal banning access to abortion in almost all circumstances took effect, its devastating impact on the lives of women and all those in need of abortion care continues. The ruling has increased the extreme barriers women seeking access to abortion face and has had tragic consequences for many of them and their families.
Since the ruling took effect on 27 January 2021, more than 1000 women have turned to the European Court of Human Rights in an effort to vindicate their rights, challenging Poland’s highly restrictive abortion law and seeking justice. These groundbreaking cases mark the first direct challenges to be filed before the European Court against Poland’s highly restrictive abortion law and the 2020 Constitutional Tribunal ruling. The applicants claim that the Polish abortion law causes them grave harm and violates their rights to privacy and freedom from torture and other ill-treatment. The Court is expected to begin ruling on some of these cases: K.B. v. Poland and 3 other applications; K.C. v. Poland and 3 other applications; and A.L.- B. v. Poland and 3 other applications.
Restrictive abortion laws such as Poland’s are contrary to international and European human rights standards and public health guidelines. They compromise women’s freedom, dignity, health, and lives. Our organizations’ interventions seek to highlight critical human rights aspects of such restrictive laws, and we are proud to support efforts to hold Poland accountable for these ongoing human rights violations, the organizations said.
Background
Poland has one of Europe’s most restrictive abortion laws. Together with Malta, it is one of only two European Union Member States that has not legalized abortion on request or broad social grounds. In Poland, abortion is only permitted in situations of risk to the life or health of a pregnant woman, or if a pregnancy results from rape. In practice, however, it is almost impossible for those eligible for a legal abortion to obtain one. Every year thousands of women leave Poland to access abortion care in other European countries, while others import medical abortion pills or seek extra-legal abortion in Poland. Polish women, particularly those in difficult socio-economic situations, have to depend on the crucial help from civil society organizations, with often limited resources.
On 22 October 2020, Poland’s discredited Constitutional Tribunal ruled that abortion on grounds of “severe and irreversible fetal defect or incurable illness that threatens the fetus’ life” was unconstitutional. The ruling followed a case filed by members of the Polish Parliament and formally supported by the Prosecutor General. The ruling came into force on 27 January 2021. Both the European Court of Human Rights and the European Commission have found that the Constitutional Tribunal does not meet fair trial requirements due to its lack of independence from the legislative and the executive powers.
The ruling eliminated one of the only remaining legal grounds for abortion under Poland’s highly restrictive law and its entry into force means that there is now effectively a near-total ban on abortion in Poland. Previously, over 90 percent of the approximately 1,000 legal abortions annually performed in Poland were on this ground. The ruling came as the COVID-19 pandemic restrictions made travel for abortion care prohibitively difficult and costly. It spurred the country’s largest public protests in decades, led by women human rights defenders. Activists and women’s rights organizations report that the ruling is having a significant chilling effect as medical professionals fear repercussions even in situations where abortion remains legal. Women human rights defenders and civil society organizations advocating for the ruling to be overturned and for reform of Poland’s abortion law have faced threats of violence and several protestors have been prosecuted.
For Amnesty International, Stefan Simanowitz: press@amnesty.org, Twitter: @amnestypress
For the Center for Reproductive Rights, Cathy Bartley: cathy.bartley@bartley-robbs.co.uk and Center.Press@reprorights.org, or +44 7958 561671
For Human Rights Watch, in London, Hillary Margolis: margolh@hrw.org; +44-773-348-6524 or +1-917-385-4107, Twitter: @hillarymargo; in New York, Aisling Reidy: reidya@hrw.org, +1 917 378 3178
For the International Commission of Jurists (ICJ), Ian Seiderman: iseiderman@icj.org
For the International Federation for Human Rights (FIDH), Eva Canan: ecanan@fidh.org, +33 6 48 05 91 57; Twitter: @fidh_en.
For the International Planned Parenthood Federation European Network, Irene Donadio: idonadio@ippf.org, +32 491 71 93 90, Twitter: @ippfen
For Women Enabled International, Brittany Evans: b.evans@womenenabled.org
For Women’s Link Worldwide, Laura Martínez: l.martinez@womenslinkworldwide.org, or +34 699 984 800. Twitter: @womenslink
For the World Organisation Against Torture (OMCT), Iolanda Jaquemet: +41 79 539 41 06, ij@omct.org, Twitter: @omctorg
Picture of a person in a manual wheelchair. They are wearing a green shirt, blue jeans and green sneakers. Their face is not within the frame of the picture. Photo credit: Canva
“So, what do you do?” When I’m asked this question, I sometimes hesitate for a moment because the topic can be awkward: women’s health issues for women with physical disabilities. I work as a Research Area Specialist within the University of Michigan’s Physical Medicine and Rehabilitation Department. I’ll admit it: this is not the area I really wanted to work in when I started working there in 2014. Like many disabled women, I didn’t experience the same level of sex education as my peers without disabilities. I was born with a physical disability and while I wasn’t sheltered, I didn’t have the “typical teen dating experiences”. Even if I’d had the opportunity to have those experiences, my disability is severe so kissing or sexual activities would have required adjustments. For example, I have limited range of motion in my hips and knees so “traditional” positions for sexual intercourse would be difficult. Limited range of motion in my upper extremities’ as well as pain/fatigue make self-pleasure quite tiring. Therefore, when my supervisor first introduced the idea of working with her on studies related to gynecological and reproductive health I was nervous. I mean it’s only been within the last few years I’ve become comfortable talking about this with my closest friends. How was I going to talk to women I didn’t know about sex, periods, and pregnancy planning? While it was awkward at first, I soon realized the importance of this work.
What is U-M PROWHD?
My supervisor, Claire Kalpakjian, PhD, MS serves as the director of the University of Michigan Program for Research on Women’s Health and Disability (U-M PROWHD). In this program, we hope to reduce barriers and empower women with disabilities by conducting research and sharing the results with patients and health care providers. Through this work I’ve had the opportunity to read academic journal articles surrounding gynecological and reproductive healthcare for women with physical disabilities. I have coordinated and facilitated interviews/focus groups and reviewed our participants’ survey responses. I quickly realized that many women with physical disabilities often lack formal education about managing periods, sex and contraception options or healthy relationships. Parents/guardians, teachers, and — as they got older — health care providers often didn’t take the time to talk about periods or if they did it was from a medical perspective. For example, they addressed symptoms like cramps or discussed options for limiting or stopping periods altogether. What isn’t usually discussed is the practical side of having a period: how to place a pad on your underwear or insert a tampon if you have limited range of motion or strength. Sex or pregnancy planning is often also not discussed. This could be because it was assumed women with disabilities weren’t interested in having sexual experiences, because health care providers may have felt like they didn’t have the right kind of education or knowledge to talk about the risks or potential complications associated with pregnancy for a woman with cerebral palsy or a spinal cord injury, or even because at times women with physical disabilities (including myself) can feel awkward bringing up these topics.
Creating A Patient Reported Outcome Measure
In a study funded by the National Institutes of Health, U-M PROWHD is developing the first patient reported outcome measure (PROM) that is exclusively focused on the health of women with physical disabilities. A PROM is information collected directly from the person themselves about a health problem or other situation. These outcomes are being used more and more in healthcare in addition to evaluation by a healthcare provider to help physicians and other health care professionals understand the health-related quality of life of their female patients with physical disabilities. A PROM can be a short form or survey that you can fill out. In developing a PROM that focuses on women with physical disabilities, we hope to help women and their health care providers feel more comfortable discussing topics that can feel awkward to bring up.
In order to develop this PROM we needed to come up with a “conceptual framework.”
A conceptual framework is a representation of thoughts and ideas about a certain topic. Having this framework helps researchers better organize and understand complex topics. Working in collaboration with researchers from the Kessler Foundation and NYU Langone Health we talked with a total of 81 women. This was done through focus groups and individual interviews. Participants ranged in age, race/ethnicity, disability type and severity, and other characteristics. We learned that several things have affected their reproductive health care experiences including:
· Having a trusting and open relationship with their provider and/or partner
· The provider’s willingness to communicate about reproductive health topics
· Self-advocacy and self-identity as a woman with a disability
· Their own knowledge about reproductive health
· The physical health care environment
This information allowed us to create the initial version of the PROM. Moving forward we will be testing the items to see how well they work “in the real world”. Unfortunately, it will still be some time before this is able to become a standard part of clinical care, but we are anxiously working towards this goal.
Creating Pregnancy Decision-Making Guides
Picture of a woman in a wheelchair, holding a baby in her lap. Both are smiling. Photo credit: Canva.
Making a decision whether or not to get pregnant can be an exciting and scary time for anyone, but when a woman has a physical disability, these emotions are often more intense. Although women with disabilities want to be mothers as much as their peers without disabilities, they are much more likely to be uncertain about whether they will be able to. Women with disabilities often struggle to find good information about the risks of pregnancy or know the questions they need to ask and whom to ask. We are currently working on two pregnancy decision-making tools. One of the tools (for women with physical disabilities) helps women to feel more certain and ready to make a decision in pilot testing. Our next step is to test it in a bigger sample and if it works as we think it does, our plan is to get it out to the public so any woman can use it if she wants.
When people make important decisions about their health, decision making tools can be helpful to learn important information about the decision and how it might affect them. It can also help promote shared decision making. Shared decision-making means that the patient and the healthcare provider work together to decide the best course of action. The tools we are creating were designed by researchers and women with physical disabilities to help women think about different aspects of pregnancy and how these may affect their health and wellbeing. They are meant to help them make a decision that is right for them. They also contain worksheets that women can use to explore topics that are relevant for them.
Working on all of the studies I’ve described has helped me grow both professionally and personally. While learning the about the barriers women with physical disabilities have accessing gynecological and reproductive health care, I realized just how fortunate I am to have the provider I do. She actually leads a clinic specifically for girls and women with disabilities and in the spirit of full disclosure, she is involved with many of U-M PROWHD’s projects.
Many articles described physical and attitudinal barriers women can face when accessing care — this has not been an issue for me. Instead, it has been more my own lack of confidence or comfort discussing this area of my life that has limited me. Talking with women as part of their study screening and participation has helped me to develop confidence talking to people I don’t know which is such an important professional skill. Hearing about their experiences has also validated my personal experiences — it’s nice to know other women have difficulty with things like placing a pad. All in all, I think it’s important to normalize these types of conversations. I’d be lying though if I said I was totally confident and comfortable talking about this. In fact, I’m rather nervous about writing this article knowing that my family could potentially read this. But, through this work I have realized that it’s something that needs to be written and talked about.
About the author
Rebecca Parten, LMSW is 31 years old and works as a Research Area Specialist for the Department of Physical Medicine and Rehabilitation at Michigan Medicine. She has a Bachelor’s degree in Communications and a Masters’ degree in Social Work. After graduating with her MSW she obtained licensure through the state of Michigan as a Master’s level Macro social worker.
Born with a genetic neuromuscular condition called Escobar Syndrome, all of Rebecca’s joints have limited range of motion. She uses a power wheelchair for most of her mobility. She also has severe scoliosis which restricts her breathing so she uses a ventilator via a face mask when sleeping. As she entered her mid-twenties her pain and fatigue increased and are a major issue for her today. She has additional diagnoses such as Adrenal Insufficiency, vision loss and hearing loss. She is a proud Hufflepuff (Harry Potter house) and enjoys spending time with her family, friends and pets. You can connect with Rebecca via her website, Facebook , and Instagram.
Getting involved with U-M PROWHD
While the specific opportunities may vary at any given time U-M PROWHD is always looking for participants!
Complete our online study interest form and we’ll reach out to talk more about the current study opportunities. You can also call (734) 763–4645 or email prowhd-research@umich.edu. We hope to hear from you soon!
24 October marks the 76 anniversary of the United Nations (UN), in commemoration of the day its Charter entered into force. To celebrate this anniversary and in the spirit of amplifying the voices and the amazing work of women with disabilities, here are three women with disabilities who work within the UN system and help us move towards a more inclusive future, following the well-known “Nothing about us without us.”
María Soledad Cisternas Reyes
A picture of Maria Soledad Cisternas speaking before the UN. Photo courtesy of UCLGCongress
María Soledad Cisternas Reyes has been the UN Secretary-General’s Special Envoy on Disability and Accessibility since 2017. A native of Chile, María Soledad is a lawyer, Law professor and researcher. She is the director of various legal and interdisciplinary projects, author of several publications and speaker at national and international conferences. In her role as Special Envoy, her mandate is to promote the rights of persons with disabilities, with a focus on accessibility for all.
“There is an outstanding debt with women and girls with disabilities in with regard to the exercise of their rights, and this is widely recognized, including in the monitoring work done by the Committee”.
Catalina Devandas Aguilar shaking the hand of the UN Secretary-General, Antonio Guterres. Photo courtesy of OHCHR.
Catalina Devandas Aguilar is a lawyer and human rights defender. Originally from Costa Rica, she was the first Special Rapporteur on the Rights of Persons with Disabilities, a mandate she assumed in 2014 and continued until 2020. In her work as Rapporteur, she focused on the socioeconomic inclusion and the promotion of the full citizenship of persons with disabilities. During her mandate, she emphasized the idea that disability is part of diversity. Catalina is currently Costa Rica’s Ambassador to the United Nations.
“It’s about us valuing difference positively. About us not trying to correct it, not trying to hide it, not trying to cure it. It’s about us saying that it is absolutely normal.”
Catalina Devandas Aguilar — Interview with Noticias ONU
You can find more information about Catalina Devandas Aguilar here.
3. Ana Peláez Narváez
Picture of Ana Pelaez Narvaez. Courtesy: Spanish Embassy in Peru.
A native of Spain, , Ana Peláez Narváez is the Vice-Chair of the Committee on the Elimination of Discrimination against Women (CEDAW), of which she has been a member since 2019. She is the first woman with a disability to serve on this treaty body.
Since joining the Committee, Ana has sought to ensure the application of an intersectional approach to the work of the Committee to account for the multiple discriminations experienced by women, including women with disabilities. She has also served as a member and vice-chair of the UN Committee on the Rights of Persons with Disabilities.
“The first and foremost challenge is that women with disabilities are not recognized as women.”
María Soledad Cisternas Reyes, Catalina Devandas Aguilar and Ana Peláez Narváez in their different roles within the UN system show how women with disabilities can exercise leadership in pursuit of inclusion in international cooperation. On this UN Day, we celebrate them and thank them for their relentless work to advance the rights of people with disabilities worldwide.
Two hands, Black and Brown, holding. One has rings and the fingernails painted in red and blue. The other one has a crafted bracelet in tones of brown, yellow and green.
Was she an aunty? A non-descript name we assigned to older looking ladies Was she a person with Down Syndrome? A designation we associated to someone with certain facial features
Was she just another unmarried woman? A stigmatized label we gave to women who chose a different route
Was she the nagging lady? A person we and her neighbors had learned to keep at distance
Was she the aunty with “problems”? A word even young children had learned to recognize, a word that meant she knew less so we needed to be kind.
Turns out she was Zaitun (alternate name used for confidentiality) An avid artist,
An expert in the art of Quilling,
Her paper-made flowers blossomed my class walls, sometimes the only décor we had
Her knowledge of colors surprised me in a way a plain person like me could never phantom.
She supported her single mum’s home-made business of selling Indian snacks,
Not a day went by when she saw my lunch and promised me her mum could make it much better.
She was my intel, I knew what went around every class,
She never skipped a beat to step in when a peer needed a hand.
She is a grieving daughter and sister,
We spent our time in the school playground,
Reliving the memories of her lost father, the one who believed in her
Reliving the memories of her lost sister, the one who disregarded her the least.
She spent her days dreaming about a future with her husband and kids,
I spent my school hours, playing detective, making sure no one would abuse her in the name of marriage.
I was too young in the world of advocacy and disability rights to understand that the right of marriage was of hers, too.
Long after I stopped being her teacher, she became my friend
The one I always made plans with, but they never happened,
The one whose calls made time fly fast,
The one who always wished the best to my family.
So maybe yes, and maybe no,
Yes, she is an aunty. That’s how older women are addressed in our culture.
She may be a person with Down Syndrome. Many people in Tanzania, like her, do not have the luxury of a diagnosis.
No, she is not the nagging lady, she holds just as much value, but didn’t give her a chance
Yes, she might be an aunty with problems, but after all who isn’t? Her challenges may differ, but to assume — and accept — that those challenges set her in a negative light is a problem we all must solve.
This is the story of Zaitun, who taught me, as a special educator, to challenge my narrow world view; who made me read articles upon articles on sexual rights and equality, who made me aware of the biases I held so strongly. She is the one who teaches me the importance of being a well-informed ally and advocate, and most of all, she is the friend who knows just the right time to call to comfort my incessant anxieties.
When imagining a world led by women, it’s likely that images of Michelle Obama or Malala Yousafzai will come to mind, as they are outstanding leaders who have reached great milestones and whose work is an inspiration to other girls and women worldwide. Even though I always looked for a direct affinity in public figures like them, I never found it.
I didn’t think this was due to a language, ideological or geographical barrier, and so my concern grew and I began to dig deeper, seeking to find the right answers to all the doubts I had about women’s leadership, which did not resemble my reality.
It was 2013 when I met Marissa Martinez, a woman and leader with a visual disability from Panama, who constantly shares powerful messages to other women with her same condition. Meeting and listening to her was something that would mark me forever.
When I met her, I was captivated by her energetic words, which instilled in me a sense of security in my own identity. As I listened to her, I understood that the affinity I was looking for in other women laid in my ability to not only feel pride in my identity, but also to instill it in other women as well, keeping in mind our particular situations, our diversity.
A picture of Estefanía Cubillos Nova with Marissa Martínez.
Today, years later, I can recognize that, without Marissa’s leading voice, I wouldn’t have taken a step forward to advocate for the rights to which we as women with disabilities are entitled, fighting from grassroot movements.
It is essential that girls with disabilities learn to accept and be proud of their condition from an early age. This is a vitally important factor that is not yet discussed at home, at school, the community.
In this context, we encounter many obstacles in advocating for our rights. From the comments made at home to the content present in the media, people with disabilities grow up surrounded by stigma and stereotypes associated with pity, imperfection and rejection.
In my case, I remember the time when I did not use the white cane to move around for fear of being ignored at school, or when I avoided eating in public places to avoid being stared at. Years later, I was astonished to find that other blind friends of mine had experienced the same thing. In that moment, I knew that it was time to act and change everything from the ground up.
A picture of Estefanía Cubillos Nova with her arms open. She’s holding a white cane in her right hand. Credit: Gabriel Elliot.
Going back to Marissa’s story, I’d like to stress how fundamental it is to assume and embrace disability as a condition that is part of our existence, from a proud and optimistic perspective. As Marissa claims,“it doesn’t matter what our condition is. We have a duty to be proud to be women with disabilities; it is a right that no one can limit. It is also our duty to stop being ashamed or hiding the fact that we have difficulty seeing or hearing.”
The key to move forward and create new leadership is in our hands. We have to start instilling -in ourselves and other women with disabilities- the importance of feeling comfortable with ourselves and what we represent.
We don’t want to be cast under the grim light of charity and eternal infantilization any longer. We never agreed to that. It is time for us to raise our voices and take places of leadership, because when women with disabilities lead, communities thrive.
De izquierda a derecha: Luz Velandia, mujer usuaria de silla de ruedas con distrofia muscular; Constanza Pérez, mujer con discapacidad sistémica; Jazmín Rueda, mujer con discapacidad visual, y Catalina León, mujer sobreviviente de accidente cerebrovascular.
Soy una mente mal educada habitando un cuerpo no normativo, objeto de instrumentalización médica, definida como “mercancía dañada”. O como a mí me gusta decir: chueca, mujer, cisgénero, feminista, educadora en Colombia, que trabaja en el campo de la inclusión y la defensa de los derechos humanos de las personas con discapacidad.
Vengo del lugar donde las personas con discapacidad son queridas, pero no deseables. Me encuentro en uno de los lugares que nadie desea, pero sí se compadece. El dolor crónico. Observo a diario la forma indolente en que derechos tan elementales como nuestra privacidad son transgredidos en entornos incapacitantes y lastimeros que se han agudizado ahora con la crisis mundial por la pandemia de COVID-19, ocasionándonos un retroceso en términos de movilidad y autonomía.
Francamente, me estremece pensar en las mujeres en zonas rurales, anuladas física o emocionalmente, que están dedicadas al cuidado de sus opresores, las que duermen en el cuarto de atrás de su casa donde reposan los objetos que no sirven, las infantilizadas, cuya vergüenza de existir tatuada en sus cuerpos y mentes no les permite reconocerse como sujetas de derechos, abrazando la idea de la resignación.
Es por esto que busco plasmar nuestro sentipensar en clave de un “nada sobre nosotros sin nosotros”, y me niego a seguir pensando que el perímetro de acción de las mujeres con discapacidad es la cocina, o el cuidado de los niños ajenos, las citas médicas, las iglesias, o las actividades de ocio, mientras otras voces –muchas con privilegios de cuerpo y clase– hablan en nuestra representación ahí afuera. En ese orden de ideas, me permitiré mencionar algunas formas en que hemos sido agraviados histórica y actualmente.
La sociedad capacitista y adultocentrista nos ubica como protagonistas de un porno inspiracional misérico que promulga la resiliencia y la alegría como virtud inherente a la persona con discapacidad, bajo un constante “mírame, si yo puedo, cualquiera puede”. Por mucho tiempo hemos permitido que nuestras historias de vida sean exhibidas para que la gente ‘convencional’ logre compararse con nosotros y se sienta mejor consigo misma.
Hoy en nombre de las existencias errabundas y dolientes, les invito a ir más allá de un testimonio motivacional, asumiendo que también habitamos la vulnerabilidad, la melancolía, la desesperanza, el sufrimiento, la ira, el rechazo, la frustración, la impotencia de no pertenecer, y el cansancio por la vida misma. Somos cuerpos a los que la resistencia muchas veces se nos va recuperándonos, recolectando energía para vivir un día a la vez, si es que la ansiedad y depresión se van un rato a pasear y nos permitan vivir la tranquilidad.
La figura de familia biológica, representada férreamente por la iglesia como el conjunto ideal padre-madre-hijos, supuesta cuna de sujetos funcionales aptos para la vida independiente, productiva y proactiva nos genera sentimientos de inadecuación, puesto que, en la cotidianidad pululan progenitores que bien pueden ser figuras ausentes, o por lo contrario se convierten en sobreprotectores que no supieron cuidar o amar (se), cuyo trato condescendiente desde nuestras infancias nos ha llevado al autoodio y al perfeccionismo. Entonces, en función de la aparente familia ideal, aprendimos a exigirle a nuestro cuerpo-mente a no mostrar fragilidad para no ser una carga, nos hacemos acreedores de una deuda de aprobación imposible de pagar: Un auto-estigma lleno de miedo anticipado a la devaluación.
Estoy segura de que si construimos nuestra identidad individual y colectiva a partir del cuidado, la ternura radical, el amor propio y la interdependencia, podremos transgredir el lenguaje capacitista, y negarnos a competir desde la comparación con otras corporalidades, rescatando, en su lugar, la importancia de las redes de afecto y dando lugar a la apertura con el otro.
Fotografía del torso de una persona en silla de ruedas que está planchando una camiseta. Lleva puesta una camisa violeta y las uñas pintadas de distintos colores. Crédito: Canva
Nuestro autoconcepto es vulnerado cuando se determina por caprichos colectivos que nos categorizan a conveniencia: bien podemos pasar de ser angelicales, tiernos e inofensivos a ser agresivos resentidos, asexuados o hipersexuados, niños o adultos según corresponda; por mencionar un ejemplo: mujeres con discapacidad que trabajan formalmente son violentadas por sus padres invasores de su espacio, su privacidad, su tiempo, monitoreando sus relaciones interpersonales, sus preferencias, porque son niñas eternas. Curiosamente, estas niñas son las mismas que se encargan de cuidar el hijo de la familiar que sí se superó –procreando –, estas niñas son las que aportan dinero en casa y la mantienen en orden. Entonces, la niña desempeña labores de una mujer adulta…
Por su parte, el sistema colapsado de salud que tenemos no se queda atrás en vulnerar nuestra dignidad, optando por abordar nuestros desajustes emocionales con medidas de medicalización o institucionalización deshumanizante, en algunos centros de salud, para acceder a una consulta nos exigen estar acompañados de un ‘acudiente’ para que hable por nosotros, lo cual nos cohíbe al expresar nuestro malestar. También, en los servicios de salud mental, los profesionales suelen revictimizarnos con moralismos de tipo “Perdónale. Nadie le enseñó a ser madre o padre”, dejando el maltrato que nos han infringido en la impunidad, ya que aún no hay leyes suficientes que castiguen el maltrato psicológico y tampoco hay educación emocional que nos ayude a identificar dichas prácticas de abuso.
A pesar de este panorama, reconozco que gracias al esfuerzo de miles de activistas a nivel mundial, hemos avanzado. En algunas instituciones ya representamos la cuota de diversidad, lo grotesco, lo inferior, lo raro, o en el mejor de los casos: lo exótico. Aún así, lo cierto es que estamos diseñados para incomodar a un mundo observador y hostil; y estoy segura de que si construimos nuestra identidad individual y colectiva a partir del cuidado, la ternura radical, el amor propio y la interdependencia, podremos transgredir el lenguaje capacitista, y negarnos a competir desde la comparación con otras corporalidades, rescatando, en su lugar, la importancia de las redes de afecto y dando lugar a la apertura con el otro.
Desde mi rol como mujer disidente, apuesto a un empoderamiento mutuo que nos permita ir del auto-estigma a la auto-estima genuina. Sueño con habitar espacios contracapacitistas donde las voces que se pronuncien sean las nuestras, donde la disidencia no sea tragedia y podamos sentir el respaldo de ese pariente (no necesariamente consanguíneo), cuya complicidad respetuosa logre reparar en cierto modo la deuda histórica que la sociedad tiene con los cuerpos enfermos, dolientes, impredecibles y sensibles. Si logramos reescribir otras simbologías que no nos definan en criterios de productividad o cuerdismo, podremos entender que seguir existiendo es un acto político, y que nuestro cuerpo debe ser territorio incolonizable.
