Spotlight on Gender and Disability | International Symposium, Flinders University Gender Consortium
15/11/2013
Thanks to Flinders University and in particular Cara Ellickson, Director of the Gender Consortium, for having me here today. As a proud person with a disability and an egalitarian, it is a great pleasure to have the opportunity to speak with you.
I acknowledge and pay my respects to the traditional owners of the land on which we meet today.
I have been asked to speak today on one of the following two topics: the progress, challenges, and recommendations on mainstreaming disability and gender, or issues affecting women with disabilities. I hope that you will forgive me for bending the rules a little, as what follows is an attempt to discuss both these topics, as in many respects, I view that them as being mutually inclusive. My reasons for this can perhaps be explained in the simplest way by my saying that to truly mainstream gender and disability, we must bring with us people of all genders, as an issue can never be mainstreamed while some who experience it are left out of the conversation. I think it is important to remember that while people of different genders may experience different challenges; those challenges are all symbolic of the human experience and the fight for broader equality.
Having said that, I would now like to turn to some of that challenges faced in particular by people with disabilities pertaining to gender, particularly in this instance, the female.
I am sure most of you here, if not all, are pretty well-versed in many of the issues faced by women in Australia today. From sexism, to the fight for bodily autonomy and equal pay, a feminist’s work is never done. It is often argued, not just by me, that women with disabilities experience the same issues faced by their non-disabled peers to a greater extent, since they face a kind of “double discrimination”: one due to their gender, and another due to their impairment.
I believe a very stark example of this, and the cycle it can perpetuate, is the issue of people with disability and their experience of sexual expression as well as violence, especially that of a sexual nature.
Anecdotally, it can be extremely difficult for people with disabilities to access adequate information on sexual development, and their rights and responsibilities regarding sexual health and safety. There are multiple reasons for this, varying depending on individual circumstances.
It would seem that people with certain disabilities can be likely to miss out on formal sex education; if for example, they do not participate in PE class due to their disability, and Sex Ed is a component of that particular curriculum.
People with disability may also have reduced access to a supportive social network (both formal and informal), and/or a reduced cognitive ability which would otherwise enable a person to know what it is they don’t know, and seek information accordingly.
People with disabilities of any gender are often infantilised, even by their closest allies, and particularly when it comes to sexuality. Society often seems to view people with disability as asexual, or as being unable to understand sexuality to the extent that would make talking about it worthwhile. And while there are cases in which the asexual label in particular may fit a person with disability, sweeping generalisations are unhelpful, and, I would strongly argue, dangerous, especially to women.
I hasten to add that I find some of the discomfort around the sexuality of people with disabilities, particularly that which comes from parents, for example, completely understandable, at least to a small extent. As I have no children (yet), I can only assume it would be natural for any parent to have anxieties around their child’s sexuality, and if it is assumed that a disability will make this situation even more complicated, it is natural to want to protect a loved one from that trouble. However it seems logical to me that this can have the unfortunate side effect of making the very situations we are trying to protect a person from, more likely to occur.
Research suggests that people with disabilities are at least twice as likely to experience physical and sexual abuse as our non-disabled peers . It makes sense that if we do not have adequate education around sexual rights and wellbeing, we are less likely to recognise abuse if it does occur. Similarly, men with intellectual disability can be particularly vulnerable to getting into social or legal trouble for demonstrating inappropriate sexual behaviour if they do not understand the usual boundaries. This is why Dignity for Disability advocates for accessible education in these areas that is based on a person’s current knowledge base, not assumed (or assumed lack of) skills.
Continuing on in this vein, women with disabilities are 37.3% more likely to experience domestic violence, and less likely to leave the abusive relationship . This is particularly the case when the person is somehow reliant on the person perpetuating the abuse. They could be a paid support worker or informal family carer such as a parent or romantic partner. It is understandably difficult to leave such a situation if the abuser is the same person helping the victim with tasks such as getting out of bed, showering, dressing, and perhaps even eating, for example. Additionally, due to the well-known issue of the gender gaps in our workforce, coupled with the barriers many people with disability face to gaining employment, a woman with disability may be financially dependent on the abuser.
Currently, workforce participation rates of people with disability stand at less than 55%, with the number of us actually in gainful employment even lower . Given the similarity with the figures for people with disabilities and Indigenous Australians, it is interesting that there is apparently no real overarching government effort to “close the gap” in this area. There is a vital role here for parliament and government to play in addressing these many barriers including the physical inaccessibility of the workforce and the many misconceptions of potential employers.
Another reason that women with disabilities may stay too long in an abusive relationship is a lack of societal infrastructure that would make leaving easier. Currently the accessibility of public transport can vary dramatically depending on what type of transport is available, which service provider’s fleet delivers it, and where a person lives. For women whose disabilities mean they cannot drive, this is particularly debilitating. Coupled with this is the concern that even if a women can arrange transport from her own home, this does not mean that accommodation available to her in an emergency will be suitable. It may be that she will struggle to find another home accessible to her, or that she fears land agents will not allow her to bring an assistance animal into a home. Given the rate at which our population is ageing there is also a role for local and state governments to play in ensuring that our city is not only adequate for our present (which, for many people with disability, is already not the case), but ready for our future.
Control over women’s bodies, and in particular their reproductive functions, continues, frustratingly, to be an issue that is subject to intense political debate. While this is an issue that all women must contend with, women with disabilities find themselves at the pointy end of the discussion. Choices around pregnancy and contraception are, for many women, made clinical, and in often very unusual ways bundled together with their disability. This has the troubling result of bringing increasingly large numbers of people into the decision making process; family members, GPs, and a range of other medical practitioners from various specialisations.
And that, sadly, is the picture for those women who have been fortunate enough to reach adulthood with decisions still to be made. There is a good deal of research to suggest that a significant number of women are being subjected to sterilisation procedures during their infancy and early childhood for non-therapeutic reasons ranging from concern about managing menstruation, to some of the concerns I have already mentioned about sexual abuse and the panic that exists around young women’s development.
I must stop here to declare a certain privilege I hold. While I have had my ability to parent questioned by certain people in my life, who, I can assure you, were not welcomed back after doing that questioning, I have never been subjected to this kind of conversation or decision formally. I cannot say that I know what it is like to have undergone forced or coerced sterilisation, nor do I know what it is to be a parent who would seek such treatment for their child. I think there is danger in dealing with these issues in black and white, however I suspect that this belief in the need to protect women with disabilities from society, themselves, and their own bodies is what makes this particular issue so persistent and so hotly contested. One need only look at the media discussion that has surrounded the recent Senate Inquiry into the issue to see the level of division and the depth of feeling that it invokes.
While I again point out that I recognise that some of the anxieties parents and family members hold in relation to women with disabilities, the non-therapeutic sterilisation of young women and girls is a poor medical response to these issues and a human rights catastrophe.
I cannot help but feel that in many respects these involuntary procedures carried out on minors are also, in part, informed and motivated by those perspectives I mentioned earlier which treat people with disability as asexual or infantile. In this respect I feel that there is, at the heart of all of this, a desire to protect that is highly patronising and is in a very real sense centred on preventing women with disabilities from developing in order to keep their physical reality in line with the expectations and perceptions of others.
And perhaps this example in itself encapsulates the underlying challenge of many women, disabled or non-disabled: Oftentimes it seems that we are at once society’s burden, and its plaything.
For those women who navigate the minefield I have laid out so far and become parents, there are other additional challenges. As I have already described in other areas, the medical world, often entirely appropriately, takes a great interest in the lives of women with disabilities. The health of both mother and child are of huge concern, however I am at pains to point out that well-meaning intrusion is intrusion nonetheless.
Concern for the wellbeing of children of women with disabilities extending well beyond pregnancy and early childhood is I feel in part inspired by some of the factors I have outlined above, such as the higher incidence of domestic violence. The best interests of the child should of course always be our paramount consideration, but there is a degree to which the pressure of observation and expectation can I think be quite harmful, particularly where presumptions are made about people’s fitness as a parent due to their on their disability.
There is nothing in this world more likely to prompt and magnify mistakes than the pressure provided by an audience, and for parents with a disability this is an additional hurdle on top of those obstacles that already exist because of their disability. The challenges faced by parents with psychiatric disability are I think a particularly strong example of this; the need to keep children safe is clearly very important, but one wonders to what degree the additional attention adds to parents’ stress and anxiety and creates something of a self-fulfilling prophecy.
Another sizeable obstacle for parents with disabilities is the lack of appropriate disability services. If one cannot access services to ensure their own needs are taken care of the task of caring for their children becomes that much more challenging. By way of an example I recall reading of a case in an interstate report where a mother lost custody of her child because she did not complete a parenting course. Her failure to do so was not a product of any carelessness or negligence on her part; she had every intention of attending and completing the course. The reason she did not complete the course was that she was Deaf, and an Auslan interpreter was not made available to assist her with the course .
For a long time now many have utilised the old mantra “it takes a village to raise a child”, and, if we accept this, it is now time to talk about how we that village accessible to all.
In short, the challenges faced by people with disability are many, and are unacceptable to most of us in twenty-first century Australia. And just as much as they are outrageous, they are surmountable. A huge part of this journey will be education and discussion, involving both disabled and non-disabled people. In order to properly achieve human rights, we need a clear shared understanding of what those rights are. And with governments and policy developers centring physical and social infrastructure on this understanding, we may finally have a shot at breaking away from the sidelines\. It’s going to take a lot of force to break that glass ceiling. It is time to make the elevators reach it so we women with disability can say we, too, made it happen.
