Marie-Andrée Boivin: Fighting for the rights of deaf people
“I am rich in diversity. From an identity point of view, I know both the hearing and the deaf culture. At the communication level, I can speak and I know several sign languages. But I remain deaf, and that’s a limit in a society that is audist and ableist.”
These are strong words from Canadian photographer, writer and film director Marie-Andrée Boivin, a fierce advocate for deaf people’s rights. Deaf from the age of three and a half after contracting meningitis, she became, at age eight, the first child in Canada to ever have a cochlear implant – an electronic device that can help to provide a sense of sound to a person who is deaf or severely hard of hearing.
Boivin is dedicated to fighting audism, the discrimination of deaf or hard of hearing people, standing up to hearing people, but also to deaf people. Discrimination, she tells us, also happens within the deaf community.
“Since I got an implant, I am reproached not to embody the deaf ideal. And yet, a lot of deaf people hear better than me! Because of the implant, I experience intimidation and social exclusion. I’ve been asked to take it off. I’ve been humiliated during job interviews. I’ve been told that I would get the job ‘only if all the deaf members of the team accept working with an implanted person’. I received threats. My projects don’t get financial or contractual backing, even though they shine a light on the deaf community in Quebec.”
While hearing people might question why a deaf person would not do everything they can to improve their hearing, for the deaf community, however, wanting to hear is often misinterpreted as a rejection of the way they are born. Using technology such as hearing aids or cochlear implant surgery implies that deafness is a problem to be fixed, which many deaf people find offensive. It is seen as overlooking the deaf community culture, its history, identity and language.
“I was told in front of other deaf people that I have an identity problem,” Boivin tells us. “My identity suits me, thank you. It’s them that it bothers. It bothers them so much that they show me they would prefer for me not to be here.”
And so, she teaches and writes about deafness. She puts deaf people at the centre of all her films, always respecting the abilities and wishes of every person, whether they have an implant or not, and whether they want to listen, talk or sign.
Her 2015 documentary “Femmes sourdes, dites moi…” (roughly translated as “Deaf women, tell me…”) about deaf women who went to the Institute of Deaf Women, the first deaf women’s school of Quebec, won multiple awards.
“I wanted to tell their stories from their perceptions and their memories. I wanted it to come from the deaf experience, and not from research and documentaries produced by hearing people. Because, like it or not, the personal experiences of deaf people can be fully understood only by deaf people. There are so many projections and fantasies made by hearing people. I saw very few works representing deafness with accuracy. Most of them make mistakes, either in their portrayal or in the accessibility of the work. It’s really irritating: we exist, why not ask us?”
WE DON’T NEED TO WAIT FOR THE GOVERNMENT OR ORGANISATIONS TO ACT TO MAKE SOCIETY EVOLVE
Marie-Andrée has also produced a series of videos to raise awareness among hearing people. Teaching deaf communication and studies at the technical college Cégep du Vieux Montréal, she has noticed how difficult it is for them to understand how communication is limited by deafness without experiencing it. She filmed real situations she is confronted with, such as parties, work dinners, conversations in cars or walking on the streets, and asked a sound engineer friend to edit the audio so hearing people can experience what she hears.
Access to information, the number one priority
Besides raising awareness, Boivin is dedicated to increasing deaf people’s access to information, which is, according to her, the number one priority to lessen their isolation from society. One of her successes is to have persuaded the French Canadian video-on-demand website Tou.tv to add subtitles to their content.
“I rallied hundreds of people via a Facebook campaign. I explained the procedures to follow and recommended writing to the decision-makers, and it worked. It taught me that we can all make things happen, our ideas can come to fruition. We don’t need to wait for the government or an organisation to act to make society evolve”.
Tackling the lack of access to information is not simple, and there is not a single way to address it, Boivin tells us. It’s not about just having sign interpreters, or subtitles or live captions during events. The solution, she explains, lies in a combination of means and techniques that responds to a diversity of needs.
“There is a majority of hard hearing people who have different degrees of hearing and who have evolved in the hearing and speaking world. For them French is the first language and they can access information: they can’t listen to the radio but they can read. And there are deaf people for whom the primary language is sign language. Some, who are literate, can access information, but for others reading and writing is a problem, and that’s an important limitation.”
The lack of accessible information can particularly affect deaf women, especially when dealing with gender-based violence, she adds.
“If deaf women don’t have easy access to information and documentation, can they understand that they are victims of domestic violence? That the problem is not them but the system, that it’s a continuum?”.
Another difficulty lies in the access of services, Boivin says. “Is it possible to get satisfactory care when we go see a psychologist with an interpreter? We need to trust the psychologist, but also the interpreter who we probably saw before and will see again in the future. It can be difficult, despite the confidentiality and code of ethics they follow. Also, if the psychologist doesn’t know the deaf culture, they can miss cultural references.”
“To be a disabled woman is a double challenge. We can talk about intersectionality: the accumulation of oppressions. We are discriminated against for being women, and also for being deaf.”
COVID and deafness
The COVID-19 has exacerbated the need for accessible information. “At the beginning of the pandemic, I created and managed a Facebook group to circulate information about COVID because deaf people were left out, and I don’t accept that,” says Boivin.
“I spent more than 12 hours a day over three months on this project. With the help of contributors, I published hours of videos in Quebec Sign Language. We really contributed to inform the deaf community and reduce their anxiety.”
Boivin is very proud of her work, even though she had to close the group due to cyberbullying and threats. She deplores that the system takes too long to adapt and that she had to take on this mental charge that should have been the responsibility of organisations that are funded to support the deaf community.
WE ARE DISCRIMINATED AGAINST FOR BEING WOMEN, AND ALSO FOR BEING DEAF
Masks too pose a major hurdle. In Quebec, where Boivin lives, it is mandatory for people aged 10 and over to wear a mask on public transport and in enclosed or partially enclosed public places (such as shopping centres, schools grounds or cultural spaces).
Masks hinder the ability to observe mouth movements and facial expressions, making communication impossible for deaf people who rely on body language and lip-reading.
“We would need to ask people to remove their mask, or to write. But then, if they take the mask off, they are at risk. It’s uncomfortable,” Boivin tells us.
Clear masks, transparent face coverings intended to make it easier to read lips and facial cues, have been marketed as a solution. But Boivin is reluctant.
“The idea is, of course, commendable. However, lip-reading is very demanding. Lip-reading a one hour class is, in terms of fatigue and energy, the equivalent of listening to more than three hours for those who can hear well. And nevertheless, we do it all the same because we want to study, to work, to belong. The problem is, clear masks still hide a lot of the face, and, above all, the visors are rarely smooth. I’ve seen models that were completely crinkled! So you can imagine the tremendous effort that we have to do with these masks that are ill-suited and also project reflections”.
Despite these trying times, Boivin keeps drawing attention to deaf people’s lives. She is currently working on a documentary about hearing dogs and how they support deaf people, a topic unknown to most. She explains how her own dog Tazza makes her life easier. “She helps me to cope with hypervigilance, and to have peaceful nights. She also stops me from feeling isolated.”
In the face of inequality and ableism, Marie-Andrée Boivin is relentlessly challenging the status quo, inciting hearing and deaf people to go past their prejudices and accept people for who they are. One of her achievements, she says, has been to remain true to herself: a deaf woman, with an implant, who speaks, signs, and works for accessibility and awareness.