Women with disabilities are women too – we will not be the forgotten sisters in the dialogue

Jamila Amadou, who has untreated club feet, gets a push through the sand from a young woman.

Jamila, who has untreated club feet, gets a push through the sand from a young woman in Kiota, Niger.
Daniel Hayduk

Stephanie Ortoleva speaks to CBM about why women and girls with disabilities must be included in both the disability and women’s right movements and the post 2015 framework.

What in your opinion are the top 3 issues for women and girls with disabilities?

Of course there are many issues and many of them are common to all women and girls but there are some that are specifically important to us where we experience them more intensely. I would start with gender based and sexual violence against women and girls with disabilities and not only thinking of this in terms of domestic violence and intimate partner violence but also other forms of violence that are put forward by or perpetrated by the government itself at some of the educational and health institutions in which women and girls with disabilities find themselves situated. We need to think of violence in a very systemic and pervasive way. Another area of great importance is legal capacity and decision-making power whether it ranges from our control of our own choices in areas such as healthcare e.g. forced sterilization and forced treatment. The other important issue among the three not to rank them against each other would be education as education is so often a key to employment and economic opportunity. Often the denial of education for women and girls with disabilities especially in segregated facilities deprives us of the keys to our economic empowerment and our own independence. The barriers to education faced by women and girls with disabilities include the attitudes of others toward our ability to learn but also for other factors, for example parents may feel that their daughter will be assaulted or attacked to simple basic things such as not having access to basic hygiene in a school setting, for example access to menstrual pads and other devices. So there are a whole variety of issues that cause barriers for us in going to school.

How important is it for women with disabilities to work in leadership positions?

This is a great question as it brings to the forefront that we don’t only want to be leaders in the disability rights movement but rather in the general women’s rights and human rights movements and of course the development movement. The importance of this stems from the fact that persons with disabilities and in particular women with disabilities are thought of in terms of ‘protection’ rather than positions of leadership and decision-making and indeed designers of inclusive programmes. This is important for 2 reasons firstly, it is essential that development and human rights programmes reflect the needs of women and girls with disabilities but secondly so that there is an integrated and intersectional approach.  For example, women’s programming will include women with disabilities rather than having a special pull out programme for women with disabilities where women with disabilities can only get healthcare in one place while so-called ‘regular’ women can get healthcare over here. The challenges are both attitudinal and educational barriers. The opportunities are beginning to emerge and we need to make them happen. I thought it was very interesting that the position of the special rapporteur on disability was originally located in the economic and social council of the UN.  Now that the position is in the human rights council, it is in a much more empowered position and is held this year by a woman with a disability.

Are the voices of women and girls with disabilities adequately represented in the women’s rights movement and in the disability rights movement?

Well my previous answer indicates that our voices are not adequately reflected. Our creativity and ideas are not always included and it is not only in disability programming but also in the area of human rights generally. We are starting to see women with disabilities who do very powerful and amazing things that put them in positions of danger. We are actually now beginning to see them as human rights defenders and not just as disability rights activists because we are seeing the threats and intimidation emerge as they are in positions of power.

I have gone to the Commission on the Status of Women both in my previous position in the U.S. government and now because of my position as the founder of Women Enabled International. In the earlier years, just 5 years ago, you would see only a few women with disabilities there, you would see no side event on women with disabilities or women with disabilities on other panels. This year I am on several disability-focused side events and I am on a panel about witchcraft accusations against women and children and I am speaking from the perspective of women with disabilities. A few years ago this never would have happened, women with disabilities would not have been invited.  Additionally, other disability rights organizations are now also sponsoring side events on women with disabilities so that is some progress.

We do have a way to go in having an impact on the CEDAW committee, when they do general comments, we get a little more inclusion due to our advocacy but we still have a long way to go and of course we are not named in CEDAW, so it makes it a little bit more difficult to make the CEDAW Committee move forward on inclusion of women with disabilities. What is interesting is that if you do read the Beijing Declaration and Platform for Action from 1995, due to the activism of a cadre of disabled women who went to Beijing there are some good provisions in the Beijing Declaration which we need to use in our advocacy.  

What are the challenges for the voices of women and girls with disabilities within the disability movement?

That is really an interesting question as there have been many cases where groups of women within a disability movement organization who have found it necessary to leave the disability movement and found an organisation that focused on women and girls with disabilities. This has happened in Australia and the UK, for example. Some actually withdrew from the disability movement as they felt it was male dominated.  I will always remember a visit I did with in my previous role where I visited a disability organisation in a Middle Eastern/North African region and the women with disabilities were there to get the coffee and literally did not speak unless spoken to and their needs were not addressed I learned. 

We have found these problems in many of other social movements and not just in the disability movement. For example in the U.S., a lot of the disability movement stemmed from Vietnam war veterans and mainly male leadership. 

How do you think the women’s movement could work with women with disabilities as first steps?

There are many issues we can work on. It is important to recognize though that we just can’t go to organizations in the women’s movement and say you need to work on our issues. The approach, which I found to be more productive, is to determine what are the issues that we can work on together, that are of mutual importance but also to stand sometimes with the women’s movement on what their priorities are.  What we really have in common with the women’s movement is issues around war and peace, sexual and reproductive health and services and I think economic advancement and the traditional roles that women have assumed. For example, women as caregiver, some of the complexities, there is mutual support for joint activism. For example women and care giving work, if a woman has a lot of responsibility around childcare and one of her children has a disability and may require additional care/assistance, these are not compensated for. Also women fulfill the role of personal assistants for disabled women, as we get older. So these are issues shared and common among us. 

What is your wish list for women and girls with disabilities in post 2015 framework?

One of the very important things is that we need dis-aggregated data on women and girls with disabilities based on age, race, ethnicity, indignity, etc., and also on the type of disability. There doesn’t seem to be a way to bring together the women with disabilities and women generally who all want their issues reflected in the Sustainable Development Goals. We must avoid a dividing strategy among the different groups such as women with disabilities and women. I think the SDGs are a perfect example. Women with disabilities are women too – we will not be the forgotten sisters in the dialogue!


Stephanie Ortoleva is a highly recognized and published author, researcher and international human rights lawyer, consultant and advocate on issues of women’s rights, disability rights.

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