By Carli Friedman, Director of Research, CQL
July is Disability Pride Month, a time for people to reject ableist – discriminatory and oppressive – ideas about disability and celebrate their identities and communities. In honor of Disability Pride Month, I thought it would be fitting to talk about a form of disability pride you may have heard less about: mad pride. For this month’s Capstone, I interviewed Meghann O’Leary, PhD, a Visiting Assistant Professor at Miami University. Meghann specializes in Mad Studies and identifies as mad. Meghann and I spoke about what mad pride is and why it’s important to recognize and celebrate.
Carli Friedman (CF): A lot of people, especially outside of academia, aren’t familiar with the concept of ‘mad’ or Mad Studies. Can you talk about the term ‘mad,’ including what it means and its reclaiming?
Meghann O’Leary (MO): Mad has a lot of negative connotations but it’s a reclaimed term, mostly an insider’s term used by people who have been diagnosed with a psychiatric disability and have experienced psychiatric treatment. Mostly, what the Mad Studies field focuses on is the lived experience of people who identify as mad. Most of the people who are considered to have expertise in mental illness or madness or psychiatric disability, whatever you call it, are service providers and practitioners. Mad Studies is a way to reclaim our experiences as our own and treat ourselves as experts and talk back to the expertise of the ‘psy’ disciplines, which includes psychiatrists, psychologists, social workers, and anyone who practices in the mental health realm.
CF: People may have heard of disability pride but they’re less likely to be familiar with mad pride. Can you explain what mad pride is and also what it means to you specifically?
MO: When I first heard about Mad Pride, I was like ‘oh there’s people who just identify as mad?’ and disclosure also wasn’t considered this huge, horrible thing. It was a different way than I learned to talk back to stigma, and to have pride in your identity and the inherent difference in the way your brain processes information and sees the world, and having pride in that, as opposed to shame. Most anti-stigma campaigns are just mitigating the stigma by comparing it to diabetes, or some other chronic or physical illness, but mad pride takes it much further and says that we should actually have pride in our mad identities.
To me it was really exciting that I didn’t have to hide anymore. That’s not to say it’s always nice to have a psychiatric disability, it’s not always fun or a positive experience, but there’s value to it and mad pride helps me recognize that I have value. For example, my psychiatrist that I saw for 19 years, her office was tucked away in this tiny cul-de-sac and didn’t have any office labeling, so it always felt very hidden both literally and figuratively. So not having to hide anymore was very freeing and exciting!
CF: Would you say that the concept of mad pride helped transform how you think about having a psychiatric disability?
MO: Definitely! Prior to embracing mad pride, I was running an autism program as a special education teacher; I was very much an advocate for my students and teaching them self-advocacy, and applying the social model to them and saying, ‘there’s nothing wrong with you, you’re brilliant, you just think differently, never let anyone tell you there’s anything wrong with you.’ But when I learned about mad pride, I realized I really adhered to the medical model when thinking of my own disability; it was very treatment focused, strictly medicalized like ‘let’s train you how to function as well as possible in society.’
Mad pride made me realize that society isn’t built for people like me, and I don’t have to assimilate in that way. It opened up a lot of doors realizing there are different ways to view this whole medicalized concept of mental illness. It was really liberating!
Now that I disclose regularly and am proud, it has also helped me develop a sense of purpose and advocacy. I feel like more of an advocate for others because most of what people hear about bipolar, especially bipolar I, is through the media, like ‘Homeland’ the tv show, and I don’t present like that. So it’s telling people that yeah, it was really bad, and it has been really bad, but I’m still here, and I’m still doing this work and hopefully opening doors for other people.
CF: For people with psychiatric disabilities who are new to this area, or even those with mental health diagnoses that don’t consider themselves to have a disability, what are some ways they can develop their sense of pride? How does someone begin the process of getting rid of the negative ideas about mental health that they may have internalized?
MO: I think community is really important – seeking out community, especially beyond therapy groups. I would say avoid those communities that are run by parents and family members. When I found community, I found supports I couldn’t find elsewhere. You don’t feel so isolated because you’re not the only one going through this and that can be a huge sense of relief.
I know when the benefits really hit me is when I went to the Mad Studies conference in Lancaster, England. I really felt like I found my people. We had a very similar sense of humor, we needed breaks at the same time, they would talk about things like ‘oh yeah I functioned really well at my job, and then I had an episode and lost all my credibility.’ So just hearing other people openly talk about these experiences was helpful. It’s also recognizing that there’s a whole world of people out there that don’t exist in these extremes.
CF: What’s important for human services providers who support people with psychiatric disabilities to know about mad pride?
MO: They should provide resources about community groups that really emphasize pride, not just anti-stigma, but literal pride and provide that information to the people they support. That would have helped me immensely if I’d known there were groups like this out there. It’s not really about not using psychiatric and ‘psy’ services, it’s about exploring other options, knowing that other people are out there doing important work.
I’ve encountered a lot of psychiatrists who believe they’re the absolute experts and they know everything, and what happens in these brief exchanges in these offices really is very limited, sometimes they see you for five minutes. There’s a great quote by a psychiatrist from Japan, Dr. Toshiaki Kawamura, who said, ‘what I can do is very limited, I can prescribe medication, but people with psychiatric disabilities need community, and they need each other, and they need to build a life for themselves.’
And I don’t want to talk badly about service providers at all – they do a lot of important work – but all the panels addressing the mental health crisis, it’s always panels featuring nondisabled psychologists, social workers, and all those experts, and it’s never talking to people who have the experience, which I think is a lot more valuable. It’s important for human service providers to help shift the conversation about who is considered an ‘expert’ in this field.
CF: For providers, personal care attendants, and direct support professionals it’s also about educating themselves to make sure they’re not reinforcing ableist or stigmatizing things about psychiatric disabilities, and helping the people they support to recognize the stigma that they may have internalized.
CF: Speaking of, a lot of the people reading this, hopefully, are somewhat familiar with the concept of ableism, but sanism probably less so. Could you talk a little bit about what that means?
MO: Sanism is privileging the sane, rational, logical mind. It favors rationality, linearity, a certain way of thinking, a certain way the brain works, and discriminating against people who experience psychosis, depression, anxiety, etc. and saying those are inherently bad and sad. Linearity and rationality is the norm… and those are very male concepts, very White concepts. It’s definitely got associations with racism and sexism and classism. Throughout history the way to ensure someone who’s considered ‘other’ remains marginalized has been to declare them of unsound mind, or ‘crazy.’
CF: What are some common examples of what sanism looks like on the ground?
MO: I’ve had people tell me ‘oh you’re going to get locked up in the loony bin’ as a joke – that would be sanist, especially because the term ‘loony bin’ is sanist. Those kinds of terms like ‘crazy,’ as well as dismissive comments like ‘we’re all a little crazy’ are also sanist. That definitely gets to me a lot.
Everyone also assumes that I don’t have a severe psychiatric disability that has really impacted my life, just because I do function well. That’s a part of sanism because people associate the chronically mental ill or severely mentally ill as barely making it day to day with other people trying to keep them alive. It’s so ingrained.
Another more extreme example of sanism in the real world are these community treatment orders in Canada, where when people who are noncompliant with their medication, they’re going to their homes and forcibly injecting them with medication. When we see that as the only solution, that’s sanism in action.
CF: Is there anything else you think people with psychiatric disabilities or human service providers should know about mad pride that we haven’t talked about?
MO: All these ‘keys to happiness’ and ‘keys to wellbeing’ for people with psychiatric disabilities that I read about that have kind of taken hold in the field, they all seem to target people who’ve never needed to see a psychiatrist and portray them as the happiest with the best wellbeing, and I just want people to know that’s not true, you can experience psychiatric disability, you can see psychiatrists in your life, and you can still have a very happy and fulfilling life. It doesn’t mean you should be excluded from happiness!
And for nondisabled people: people with psychiatric disabilities are out there, we’re living in your neighborhoods, we’re going to your schools, we’re teaching at your colleges. We’re out there and we’re not going away so you might as well reframe your understanding of us, rather than forcing us to live according to your standards.
CF: I think that’s a great point to end on! Thank you!
Spreading Mad Pride Beyond July
As Dr. O’Leary explained in our interview, mad pride can often serve a dual purpose. Mad pride can help rid people with psychiatric disabilities of society’s sanist ideas about themselves and their disability. Mad pride can also help shift the conversation about who is considered to be an ‘expert’ in the field of psychiatric disability. As a result of these benefits, we should all work to celebrate mad pride, either personally if we have a psychiatric disability, or by empowering the people with psychiatric disabilities we support, not only this July, but throughout the year!
Ableism and Prejudice Research
This vein of research examines ableism – discrimination and prejudice against people with disabilities – as well as the attitudes (both conscious and unconscious), prejudices, and stereotypes that contribute to, and/or reinforce ableism.Project Details