The Struggle of Autistic Mothers
The Universal Declaration of Human Rights states in Article 16 that “men and women of full age, without any limitation due to race, nationality or religion, have the right to marry and to found a family” [1]. A basic right that most people take for granted. A basic right that is stripped away from many disabled persons. Unfortunately, I never knew of this human rights violation before attending the 12th session of the Conference of States Parties to the Convention of the Rights of Persons with Disabilities (CRPD), and more specifically, the side event Leave No Autistic Mother Behind, which illustrated the struggles of austistic mothers. The event was organized by the Maltese government and United Nations Department of Economic Social Affairs (UNDESA), and co-sponsored by the Autism Research Centre- Uni Cambridge and International Disability Alliance, among others.
Claire Azzopardi Lane, one of the panelists, explained that the sexuality of disabled people is becoming increasingly recognized. For instance, article 23 of the Convention on the Rights of Persons with Disabilities promotes the right to “reproductive and family planning,” and the right to freely explore and express their sexuality [2]. However, this human right is neither respected nor recognized in many countries worldwide. For instance, the culture in Malta puts a lot of pressure on mothers, as their traditional role is caregiving and child bearing, but disabled women are not expected to fulfill the same social role. In fact, they are strongly dissuaded from having children and forming families as they are deemed unfit. This oppressive culture believes that disabled women can only produce defective and dysfunctional babies, and that they do not have the capacity to raise children.
These women experience a double stigma, because of their gender and their disability, and are constantly challenged by controlling and traditional customs. Thus, disabled women who do become mothers transgress cultural norms, but risk losing their children to child protection services since they are perceived as inadequate parents. Furthermore, children born to disabled parents have a higher chance of experiencing discrimination. In response to these challenges, Malta recognized in 2016 the need for a rights based approach regarding parenting. For example, a national disability strategy was launched in 2016 to support disabled parents and help them fulfill their familial roles. There is still a need for more equality between the disabled community and non-disabled people, but it is a step forward that hopefully will encourage other countries to take action.
I was very moved by the presentation, especially when Dena Gassner, an autistic mother, shared the challenges that she has to overcome on a daily basis because of her disability. Through her tears and vulnerable strength, I learned the pain that the autistic community constantly experiences. She explained the consequences of autism and the stigma linked to the disability, emphasizing the prevalence of mental illness amongst the autistic, which frequently leads to self harm and even suicide. The panelist highlights that anorexia is also very common as a way “to make your body silent.”
Furthermore, the stigma attached to autism leads to issues such as having access to health care denied. Mrs. Gassner gave the example of an autistic trans-man who has been denied from undergoing surgical transition for the past 20 years, which is a common problem as doctors doubt autistic people’s capacity to make choices. Stigma also gives rise to disabled women’s vulnerability to sexual abuse. The panelist mentioned a study that has showed that 40% of autistic women reported sexual abuse compared to 26% of non-autistic women. Another problem Gassner expressed was that life experiences, such as childbirth, are very difficult for autistic women because of the lack of sound defenders in hospitals. “Birth didn’t happen to me, it happened at me,” she claimed.
Having an academic as well as a personal lens has taught me and the audience the challenges that the autistic community have to overcome. It increased my knowledge of a crucial issue that does not receive the attention it deserves and needs. Disabled persons and parents need to be empowered and given the platform and voice to share their experiences and demand that their human rights be promoted and respected. When Mrs. Gassner finished her presentation, she argued that there is social pressure on autistic people to outgrow their disability. Therefore, as a society, we need to accept them and see them as equals so they can accept their identity and learn how to live with their autism. Only then can SDG 5 and SDG 10, which focus respectively on gender equality and the inclusion of disabled individuals, be achieved by 2030. To learn more, join or support an organization that focuses on advocating for disabled people’s rights and visit https://www.unhcr.org/4ec3c78c6.pdf, which lists different NGOs and UN agencies around the world dedicated to this cause.
References
[1] “Universal Declaration of Human Rights,” United Nations, www.un.org/en/universal-declaration-human-rights/.
[2] “Article 23 — Respect for Home and the Family Enable.” United Nations, www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/article-23-respect-for-home-and-the-family.html.
