>> Allilsa: 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. How can we talk about mental health openly in Latinx culture?
But guess what, we are not given those spaces to have those important and valuable conversations.
>> Áine: [Speaking over intro piano music: forthright melody accompanied by a habanera dance rhythm.]
Welcome to Disability Crosses Borders, a home for the stories where disability, migration and culture meet. I’m Áine Kelly-Costello. Today, I talk to US-based Latinx mental health and disability advocate Allilsa Fernandez about how mental health spaces fail to consider the needs of disabled, Deaf and culturally diverse communities. We talk about her own lived experience and what holistic systems of care and support could look like.
Visit disabilitycrossesborders.com to share this episode, for transcripts and to support the show.
[music fades out]
>> Áine: It’s so good to have you on disability crosses borders. Welcome.
>> Allilsa: Thank you so much for having me. My name is Allilsa. My pronouns are she/he/they interchangeably, which means to switch it up. I’ve been a mental health advocate for, I would say 15 years or so. And disability advocate for, I would say four years or so. And I guess we can dive into that later on. Why is that there’s that division.
But I also have done activist work, so protesting on campus for disability rights, and help advance some policies in regards to mental health and disabilities.
>> Áine: Awesome. And can you talk a little bit about where you grew up? And which cultures are your background and which are important to you?
>> Allilsa: Yeah, so I grew up in New York, Brooklyn, New York. I’m a Latinx, brown person, non-binary, queer. And so those communities are very important to me, the Latin x culture, the TGNC space–
>> Áine: [Aside] Trans and gender nonconforming
>> Allilsa: –and LGBTQIA space. It’s important for me to share in those spaces with people who understand those identities and the struggles that comes with those identities.
>> Áine: Yeah, it’s also intersectional. Right? Like, you can’t pull them apart. >> Allilsa:
[Laughts] Yes. >> Áine: Policy and cultural understandings both can shape how people with mental illness are treated. And I was wondering in the US, how do you see those intersections playing out for Latinx who have or deems to have mental illness,
>> Allilsa: We are hoping the future and by we, I mean, the folks who have intersectional identities, are hoping for a future that is intersectional. But unfortunately, currently, the mental health system, the mental health activist space, the disability communities and the disability organisations are set up in a way where it is predominantly first off white based and white centred. And second off is sis bass. So we’re we’re not yet there, where it’s intersectional, or where intersectionality is taken seriously. Oftentimes, folks like myself, find ourselves coming into these spaces and having to leave one of our identities out, whether that’s race, gender, or sexuality.
>> Áine: What do you think that it would take to make disability organisations move towards more intersectional approaches? Is it leadership from multiple marginalised people? And like, what would it take to sort of create that space?
>> Allilsa: I thought, for a very long time, that it would take leadership within these organisations to create the shift. And what I’ve noticed is that there’s always barriers there, and there’s probably going to continue to be barriers there. So it’s very hard to challenge or dismantle the system. So I am now reflecting on my experiences, and I think that creating our own spaces, creating what’s needed. Not waiting for someone else to give us permission to create those spaces or to grant us permissions to exist in an intersectional way, in these spaces. Because I’ve been in organisations where I have been part of the leadership, and here I am thinking, oh, we’re going to dismantle it, and we’re going to change the culture, and we’re going to change things.
But the thing is, if you don’t have people to back up your dreams, and your visions from within, it’s very challenging. First off, it all falls on you. So you’re the only person trying to make these changes, which can lead to mental breakdown, can lead to illnesses physically, can lead to spiritual crisis to so many things, right? It causes turmoil and the labour and the emotion consistently falls only on you. So that’s first off.
And then second off, it’s hard to get folks who are already resistant, and already placing barriers to begin with, to convince them otherwise. There was this one time in college, you know, there’s this famous organisation called Active Minds, it’s a mental health organisation, national mental health organisation. And for two years, I was like, I wanted mental health to be in football stadiums and in basketball spaces, and in dining rooms, like in public spaces, rather than for folks to come to you. And I propose that idea for two years: “can this be changed? Can you accept this idea?” Asking for permission. And what ended up happening was, I kept being told “no, we’re not ready. We don’t want you. We don’t accept it”.
I created my own space finally. And it was so successful. so successful that we were seen as the role model organisation, for all organisations on campus. That–that says a lot, all that to say, don’t be afraid to create those spaces, don’t be afraid to start what you want to see in this world, rather than waiting for someone else to create it, or working with folks who are resistant from the very beginning.
So I think now, that our energies, our labour, our money, our being are better spent in creating those spaces, rather than continuously asking for permission. And 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, so powerful, why invest in people in organisations that are not ready, when you can invest in people in organisations that are ready.
>> Áine: I love that. I think being able to work in the most empowering way, you know, standing in your own power, but also working with the allies who are already in a space where you feel like something productive–productive not a capitalist sense, but like in a sense of being able to move forward and create something beautiful and intersectional together–can actually happen.
[Short interlude; four forthright piano chords]
I’m interested from your Latinx identity as well. Do you think that that had a bearing on how you understand mental illness and sort of the from the ethnicity side, sort of the cultures you walk between and maybe you could start off by sharing–only what you want to but–sharing a little bit of your lived experience of mental illness?
>> Allilsa: Yeah, and I think that’s part of not having intersectional spaces. That’s part of the problem. Because you’re leaving out communities and those communities don’t have the resources don’t have the knowledge and awareness of disabilities and mental health. And that happened to me. It personally happened to me.
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. The blame got placed on me as a person, as if it was my character, rather than what was actually going on, which was psychosis.
And but I also don’t blame my family because they didn’t have the resources. It was an an aunt of ours years later, by the way, actually, this was recently, who also had an experience with psychosis. And when she had a crisis, the family came together, sat down together, and was like, Okay, how can we be supportive to her? And 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. How can we talk about mental health openly in Latinx culture? And it was the most empowering discussion ever.
But guess what, we are not given those spaces to have those important and valuable conversations within the mental health community and the disability community.
[Short interlude; four forthright piano chords]
>> Áine: And I wonder if you have any thoughts on the language dimension of that as well, and, you know, providing sort of bilingual spaces, providing the resources for interpreters? Does that all sort of come into it as well?
>> Allilsa: Absolutely, absolutely. I would say 99% of the mental health calls. within the United States, I can’t speak for other states, I’m sorry for other countries, but within the United States, they’re in English and in English only.
And not only that, but just knowing that the mental health space is very divisive from the disability space. And that in itself, is a big issue. Why? Because going back to the language, we don’t see ASL–
>> Áine: [Aside] American Sign Language
>> Allilsa: –in these calls. We don’t see captioning in these calls when it comes to mental health. Yet people with physical disabilities or other invisible disabilities like brain injury, developmental disabilities, they can also be experiencing a mental health experience. But it’s not addressed in the mental health space, it’s very divided. There’s so much ableism within the mental health space. So language is important.
I personally have confronted hotlines who are supposed to be in support of a person that’s going through suicide ideations or contemplating suicide. And I’ve asked them, I said, Do you have a TTY connection? Or any other connections for folks who are deaf?
>> Áine: [Aside] TTY refers to a text to telephone service?
>> Allilsa: “Oh, we didn’t think about that.” You’re leaving out a lot of people, you know!
So these are issues not just in Latinx culture. But when it comes to disabilities as well. And it’s important to have resources in all languages, but also, in simple language. We have to consider disability as much as culture. This is why intersectionality is so vital. So vital.
>> Áine; Absolutely. And I think those intersectional conversations play out or need to play out all the way from, you know, those initial hotline calls, right, all the way through to what happens after that. Like, Are there harm reduction programmes, or are there other forms of healthcare that people from this diverse range of backgrounds with a diverse range of access needs can actually access? And I was wondering whether there are other barriers sort of thinking, you know, more holistically across healthcare and other supports that Latinx people, maybe undocumented people–disabled people–face in trying to access those services.
>> Allilsa: Absolutely, language being number one, but like I said, most of these services are in English and English only. Whether that’s a meeting, or resources on paper, or the therapists themselves. How often have I heard from Latinx folks saying, I can’t communicate with my therapists, I don’t know English, and they only speak English, to find a Latinx therapist is very difficult. And that in itself comes from a racist system.
For folks to go into Master’s, a master’s program, they need a lot of money. They need support, there’s just barriers there in itself. So the number of psychologists who are Latinx is less than 1%. And Latinx, who are therapists are less than 5%, meaning social workers and mental health counsellors. So to find a Spanish-speaking therapist is very difficult, very difficult.
And then when it comes to undocumented folks, and I’ve seen this happen so much as a peer specialist, and I’ve seen this happen in organisations where I volunteer as a peer as well, where folks are undocumented, and 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 cannot provide mental health services for undocumented folks. That hurts my soul.
>> Áine: That’s so sad.
>> Allilsa: 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. And I don’t know of one single hotline that’s mental health, that’s open either in Spanish, or for undocumented folks, specifically to address mental health, or even disabilities. And that is safe.
>> Áine: Yeah, it’s so many layers, because it really strikes struck me what you mentioned a few minutes ago, in terms of, you know, at a family level. And I imagine this is the case in a lot of cultures. But maybe particularly Latinx and maybe also Asian cultures that mental illness is seen as this individual problem and not a, you know, a collective or a systemic thing.
>> Allilsa: The way the system is set up in itself is I don’t understand it at all. I have a dream of one day, having a space that’s holistic, that’s truly holistic, because and this is not just Latinx, but across the board for different cultures. And mentioning that Latinx has a higher rate of poverty, due to systematic racism. Latinx folks get paid less than white folks, they are less likely to get jobs due to racism. So there’s all of these inequalities already that are set up so that Latin x cultures have a higher rate of poverty.
And so one of the things I often seen, even having worked in the mental health field is and also having lived experience is, often the therapist asks questions like “how is your day today?” “Oh. And what was your symptoms like?” And then they give you this work sheet, whether that’s coping skills, or something you’re going to practice, and it’s supposed to magically heal you.
I have never heard a therapist say, “Are you hungry?” “Do you have stable housing?” “Where are you sleeping tonight?” And that’s important, because if for example, a person has lived experience with depression, or lived experience with psychosis, how are you supposed to, quote-unquote, reduce the symptoms? If not having food is stressful? If not having housing is stressful. If not having clothes or being able to go to school is stressful. Those are triggering factors. Those are things that cause us to be upset and not have a good mental health.
So I don’t understand how the system operates that they forget all about the basic needs and move on. So, oh, we’re just going to solve whatever other problem you have. I don’t think you can move on without addressing basic needs. And so I envision a society in a system where when the person walks into a mental health place, 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.
>> Áine: I love your dream. I want to see it happen. If people want to follow your work and support you. What’s the best way for them to do that?
>> Allilsa: Yeah, so they can go either to Instagram. And my name under there is Inspirational Mental Health. or follow me on Twitter, which is Allilsa F, which is A-l-l-i-l-s-a F. Or on Facebook, which is my name. And last name Fernandez.
[Speaking over outro piano music based on a habanera dance rhythm.]
>> Allilsa: Thank you for having me. Thank you for hosting this space.
>> Áine: Thank you so much.
You can share this episode, find transcripts and support the show at disabilitycrossesborders.com. Till next time!
[Music continues and fades out]