Not being heard: #metoo and disabled women

Not being heard: #metoo and disabled women

Speech performed at the #Metoo conference in Reykjavík on the 18th of September 2018

Anna Sigrún Ingimarsdóttir, doctoral student in disability studies and a social worker

 

The #metoo movement initiated waves of fires when women on a global scale started to open up about experiences of sexual violence, an issue surrounded with stigma and often forced socially accepted silence. This led to what could be identified as a paradigm shift regarding rhetoric of violence towards women. Many women came out and talked about their experiences some being very courageous pointing to their abusers that in some instances led to their deserved public fall from grace. Subtle ideals of patriarchy were busted for their oppressiveness towards women. As a woman and a social worker prior and post #metoo, I definitely sense winds of change. Women have more space to express themselves on taboo issues, that before were considered private and not socially acceptable to voice out. That being said, victories have been won and that should be celebrated. There is no question about that. Hence I am very proud to call myself a feminist today and think of it as a privilege to live through these times.

However, victories won by the #metoo movement have not been applicable to all “kinds” of women, notably those belonging to minority groups. According to the World health organisation disabled people is the world’s largest minority group, with approximately 15%  of the global population being disabled, that adds up to over one billion people experiencing disability. WHO estimates that disability prevalence is almost 60% higher for women than men. These statistics being even higher in developing countries. According to the United Nations, disabled women and girls of all ages are generally most subjected to vulnerability and are most marginalised in society. All in all, it is clear that disabled women make up a gigantic interest group that should be given much more attention.

Pertaining to the issue at hand, it is not new for disabled women to be silenced, invisible and discounted by nondisabled people. Even within human rights agendas, for example, one of the main reasons for the development of the Convention of the rights of disabled persons was due to prior human rights treaties not being effective enough to realize justice for disabled people. The same goes for feminism of the past and present. For example, historical accounts of early women´s rights movements disclose that the suffragettes emphasized the undesirability of disabled people as citizens.

Experiences of disabled women are often difficult for outsiders to comprehend and relate to. Society teaches from early age to pity disabled people and that they are sufferers in need of assistance and rehabilitation. This leads them among others to be subjected to infantilisation, medical gazing and charity. These believes are so deeply rooted and intermingled within our cultural hegemony that it can be said that chances for disabled people to self-identify, have been hijacked. Ironically by those usually kindly meant gestures of others. Efforts to protest are often met with resistance and disbelieve where disabled people run the risk of being demonized or judged ungrateful. These factors and structures provide ideal breeding grounds for oppression and injustice.

Sexual violence and other types of violence, and how they are generally understood and defined, commonly do not take count of lived disabled experience. Perhaps because these experiences are for many so far from their realities and imaginations, making it difficult to sympathise and understand. To truly include disabled people, I think we need to broaden our definitions of violence and take count of the age old oppression and stigmatization of disabled people.

There are of course many aspects to this, but one is looking critically at dealings with professionals. There is no question that disabled people can and do benefit from health and social care. However, these services have been led by service providers and are often very patronizing. Many disabled people have experienced frustrations where they felt degraded, impotent or even felt their personhood was reduced.

Part of socialisation is learned respect for health professionals. Professions that arouse mixed feelings for many disabled people for their condescendence and their usually well-intentioned interventions, which can break and do break disabled people’s boundaries. This is indeed a complex issue with many sides to it rooted among others in deep societal beliefs that disabled people are in need of help and must be cured. An important issue to address, is when is the line crossed? When does care become violent? Who gets to define that and how? For example, when does a catheter insertion become an act of violence? When does a physical examination become violent? Is it when a disabled person protest? Is it when the examination room fills with students looking at how to do a physical? Is it only violence if the person being examined is not asked for approval? Is approval enough? How many students looking, is that a defining factor? I could carry on. Another example is that of disabled women’s sexual health. What is adequate care and good practice when it comes to those issues? We know that disabled women have both been hypersexualised or deemed undesirable. There is also another dimension I have rarely heard spoken of openly but have had many women especially those with invisible disabilities disclosing on. For example, when they as children were made to undergo various procedures so that that they could be “penetrated by their husbands in the future” (this is a true quote I did not make it up), some of those procedures being very painful and humiliating. Even unnecessary and possibly harming, purely for aesthetics, for example on clitoris to make it look “right”. There are also the well-known cases of women that underwent operations to correct prolapses of the uterus or bladder where a net was inserted to give support. These operations for many women resulted in suffering to the point of not being able to have intercourse and even leading to suicidal thoughts. Adding insult to injury some of these women were advised by doctors to take up anal sex. Issues having to do with health care provision, like in these examples, are often ignored or simply discounted by sayings like “this was for your own good”, leading to the question, how far can for your own good be extended? Coming out with narratives of violence within structures such as institutions can be a risky business, sometimes even met with anger. This makes it very hard to come out with your experience. The power hierarchy is very prominent and subtle to the point that people deny it, are unconscious of it, sometimes even defending it.

Disability rhetoric does not fit wholly with the mainstream #metoo, there are of course nuances, but on some issues mainstream #metoo and disability stakeholders take completely opposite sides. For example, on the controversial question of surrogacy, an issue important to many disabled women. These women speak about how they are held down and denied platform to voice out the many dimension of surrogacy. Among the suppressors are feminists and #metoo activists. Attempts to critically dispute surrogacy are usually dismissed. Often reasons given for dismissal is that it´s not a human right to procreate or have children. Ironically human rights are used to silence a group that holds an opinion potentially unsettling the norm.  This is an interesting paradox from a human rights perspective. Whereas it is also a human right to have a voice and right to partake in arguments, especially for a minority groups, like disabled women, a major interest group when it comes to surrogacy.

Debates on surrogacy have wreaked much havoc and tacky words have been spoken, some even violent. A well-known Icelandic feminist compared surrogacy and those who support it or use it to rapists. I know that many disabled women took these words very personally and felt they had been bullied and frankly violated. Interestingly, the same justifications are also used to hinder disabled women from becoming mothers, for example by the Governmental child protection agency in Iceland. That remains a topic for seminars of the future.

What must be kept in mind is that #metoo is still in its infancy. There is still much work to be done. Recently I read the article „Being number one is the biggest obstacle“ written by Brennan, Traustadóttir, Rice and Anderberg, four Nordic disability studies scholars. Simply put, they argued that our biggest obstacle for truly realising more justice, equity and human rights is that we in comparison to other countries rank highest on these issues. This makes us feel safe, lazy and takes the teeth out of our willingness and activism. “We don´t have to do anything, we are the best”. For me this is the worst type of ignorance and indifference.

So, where to we go from here? In its simplicity I think it is most important to be accountable and listen, truly listen. I would like to end this talk by quoting Mia Mingus, a disabled activist; ‘Accountability is not a destination, it is a skill we can build and practice. It is an art …  we can learn how to wield, just as we have learned how to wield hurt and shame and fear. If accountability is a skill we value, then we must make room and make commitments to practice it ourselves … What if we embraced accountability as a reflection of our undeniable, incredible, tender humanity? As a magnificent example of what it means to be human and flawed and in relationship with one another? What if we welcomed the quickening of our pulse and the beating of our heart as signals of being alive and caring and what is most important to us: our relationships with each other? What if we listened?’