When queer, non-binary, disabled Latinx mental health advocate Allilsa Fernandez first talked about her lived experience of psychosis with her family, it was a challenging conversation.
“You know, when I had symptoms from psychosis, my family didn’t say, Oh, this person is struggling. How can we be supportive? How can we help find resources or, or help? It was, oh, she’s lazy. They don’t want to go back to school. They choose to not work. They choose not to go to school.”
But, Allilsa (pronouns she, he, they) says, she also doesn’t blame her family, who are Latinxs, for reacting that way. They were parroting an entrenched cultural understanding of mental illness as an individual problem.
“We have to talk about mental health as a family, we can no longer hide in secrecy, we can no longer be ashamed by this.”
“But guess what,” she continues. “We are not given those spaces to have those important and valuable conversations within the mental health community and the disability community.”
Allilsa, who has worked in mental health advocacy and peer support for the past 15 years, says that they’ve had enough of asking people leading white-dominated spaces for permission and influence, when organisations are not ready for change. He suggests that multiply-marginalised disabled folks are much better off creating their own spaces.
“In creating our spaces, it is empowering, we are accepted. We are valued. We are embraced, we are uplifted, we are encouraged, we have a network. And I personally think that is so powerful.”
The marginalisation and barriers extend throughout the entire mental health support system. Some of them, Allilsa says, come down to the problematic separation of disability from mental health advocacy. That institutionalised divide leads to a lack of availability of alternate formats of information (e.g. in plain language), or ways of communicating (e.g. hotlines with TTY/text telephone or American Sign Language options), or physical access to clinics.
Latinx under-representation in social work and mental health counselling, itself tied into barriers around the need for expensive qualifications, means that there is a lack of Spanish-speaking therapists, as well as a lack of hotlines where Spanish is available. The situation is even worse for undocumented folks, as Allilsa has repeatedly witnessed.
“They’re turned away, because the grants that they’re receiving, or federal aid that they’re receiving, the way that is set up within the mental health space, they [peer support organisations] cannot provide mental health services for undocumented folks.”
“That hurts my soul,” she says. “I lost count of how many folks we have to tell, “we can’t help you.” We can’t even have a conversation where this person can even vent because of this barrier.”
Compounding all of this, in Allilsa’s experience, is the entrenched understanding within mental health therapy, at least in the US, that mental health is an individual’s problem which can supposedly be dealt with by asking only about symptoms.
“I have never heard a therapist say, “Are you hungry?” “Do you have stable housing?” “Where are you sleeping tonight?” … Those are triggering factors.”
They dream of creating an entirely different place of support and care.
“First off, it’s accessible, there needs to be a ramp, ASL, captioning–all of that, so it’s accessible. And that right down the hall, you can tell someone, “you don’t have clothes, go down the hall, go grab some clothes, we got you. You don’t have food, we have a pantry. You’re not leaving this space without food. We got you. And we’re going to help you fill out for food stamps, if that’s what you need and want. And we’re going to help you fill out for housing if that’s what you need and want.”
“So it’s asking these basic things and providing these basic things before you even begin to address anything else.”