Final Project: Photovoice exploring invisible disability

Some Background:

I am so appreciative for the opportunity to capture the meaning of invisible disability within photovoice. Engaging in a final project that allows me to highlight invisible disabilities, especially felt extremely significant.

During my project process, I made a difficult decision to re-route my final project. While I was gathering participants over a month ago, people were excited to be engaged and eager to share their stories, as well as connect with others who share similar experiences of invisible disabilities. However, as we have approached finals, many of the participants I originally connected with, shared that they could no longer participate due to the stress of finals and needing to take care of themselves. Though I am not sure about the disabilities that each of the participants had, I was so appreciative at their strength in letting me know that they were at capacity.

Therefore, using the framework of my photovoice project located here , I decided to document myself and capture what it is like to be a graduate student and have multiple sclerosis. The following project will include a set of photos that capture my experience, as well as share my personal journey in response to the central questions outlined by the final assignments rubric.

I am so appreciative that I am able to readjust my final assignment in a way that can still capture my original theme of invisibility, though my disability often feels hyper-visible to me during a stressful time like finals.

If you would like to access the original photovoice proposal, background, and instructions, please click here. Below is my own photovoice with my written responses to the questions outlined by the project’s prompt. Additionally, as this blog post in lengthy, a google document of this blog post can be found here.

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What is Multiple Sclerosis?

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1. What is your understanding of how community and social systems can play a role in improving the well-being of individuals, families, organizations, and communities and in promoting greater social justice in your area of interest?

From first hand experience, I know that community is everything. It plays a crucial role is letting us feel seen, even when we feel invisible. When I see someone else with MS post about how hard it was to get up in the morning even though they had 9 hours of sleep or how their mind has felt foggy and it is difficult to think, I feel more confident that my experiences are real and valid.

For people with invisible disabilities, community can be hard to find. As someone who receives medical care from across the country, I don’t always have the same opportunity to attend monthly groups for people with my diagnosis that are hosted by my healthcare center. Even if I was close by, admitting to myself that having a disability is a significant part of my life is hard, especially with other people. Will my disability feel more real if I am recognized to have it by others?

Since my diagnosis, I have learned that navigating the healthcare system is hard. Two years in, I am still struggling to understand my health insurance, receive free treatment, and manage the possibility of not having adequate insurance at age 26, despite a annual bill of $70,000.

That’s the thing about invisible disabilities, it is hard to find a physical community outside of online groups. I have never been in a community where everyone knows that I have a Multiple Sclerosis. What a relief that would be. However, though I may not have a disability community like I have a queer community, my disability community from afar often gives me strength and hope. When I say disability community from afar, I am talking about hashtags, news articles, and photos of people with MS that are as young as me. Simply following hashtags like #mswarrior gives me access to a greater community of people who have every day fatigue, back pain, and mood swings, just like I do.

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This photo represents of source of community for people with MS. The MS buddy app, allows people with MS to meet others of their similar symptoms, age, location, and diagnosis length. Though I may not utilize many apps like this one, there is great comfort in knowing they exist.

For MS especially, online communities are often the most accessible communities we have access to. When first moving to University of Michigan and beginning school, I did not have the physical energy to make connections with classmates outside of the classroom after a long day of placements or classes. I struggled to balance a social life because my symptoms did not always make socializing physically accessible. Though my online community of people with MS, I have seen people organize MS awareness campaigns, walks, and share their stories with the non-MS community to demand change in healthcare and insurance, workplace expectations, etc.. For people with invisible disabilities, there is no doubt that online communities play a significant role in community building. Following disabled instagrammers like @the_feeding_of_the_fox gives me strength and solidarity, even though we have never met.  

Unexpected community:

Every Friday, I attend a queer support group at CAPS. Though we talk about how hard it is being on the U of M campus, where all spaces are dictated by both cisnormative and heteronormative assumptions and values, many of us also talk about disability as a key part of our lives. In unintended ways, my queer group has been the community where I feel most seen and empowered because I am seen as both queer and living with a disability. It is within this unique community that I am seen as having MS, as well as seen as having other identities and experiences. When I visit my doctor across state, I feel embraced by a very caring system of doctors and social workers however, I am only seen as someone with MS and there is little acknowledgment of the other positionalities that impact my disability.

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My second unexpected community was in my first disability class at the University of Michigan during Fall 2017. In that class, almost everyone shared that they had a disability and disability, for the first time, became a source of pride and group membership. Our classroom constantly focused on accessibility and my professor allowed classmates to lay on the floor while learning if that was most comfortable for them. Additionally, our class was two hours instead of three, to acknowledge that three hour class is often not accessible to people’s energy and attention needs. This class was the first time that I was instructed by an “out” disabled person, the first time I heard the term “crip” to describe myself, as well as the only space on campus where my identity was celebrated, rather than medicalized or othered. In every conversation about multiple sclerosis that I see, the goal is to eliminate the disease and to make the world disability free. Though MS has real health complications and is often a source of pain, due to my access to a college classroom, I also learned that my disability is something to be valued.

2. How does gender, racial, religious, economic, or other diverse characteristics of a community affect the needs and assets to be mobilized in your area of interest.

Statistics say that white women are most likely to be diagnosed with MS and that Black women are most likely to have more severe symptoms. Based on this reality alone, it is evident that race drastically impacts how people experience MS, as well as the supports they have access to. Because I grew up in a family where my parent had attended college and graduate school, I had access to incredible health insurance and without access to health insurance, treatment is impossible. Due to being a white person from a middle class family, I not only had access to health insurance but, had access to a parent who had knowledge of how to navigate the healthcare world.

Additionally, my family’s white middle class norms allowed my disability to be accepted and understood. Though I had never heard of MS before my diagnosis, everyone in my social circle and family, knew of someone who was living with it. Reflecting back, I think this is greatly due to being white because white people often have heightened access to healthcare supports and the medical language that explains Multiple Sclerosis. During my diagnosis, I was supported by my family and doctors. Healthcare professions, though less than sensitive to disability, believed my symptoms and took my healthcare seriously. I was never denied care because of my insurance, socioeconomic status, or race. Though I was continuously concerned with finances while I was staying in the hospital before my diagnosis, I knew that my family would be able to support me with hospital bills afterward. My hospital bills did not bankrupt my family and I accessed healthcare professionals who both looked like me and had shared cultural norms and beliefs. I am most aware of white privilege when I am navigating health care systems.

Additionally, being queer and having MS has brought up more barriers than I would have ever expected. Having never had a significant medical concern prior to my diagnosis, I did not have to routinely experience heterosexism and invalidation of my identity in a medical setting. Of course, I hated going to the doctor because of the assumptions medical professionals often made about my body, contraceptive needs, child bearing interests, or partners. Having to go to so many doctors appointments with doctors I would only see once was hard. Being continually asked questions that invalidate who I am is harder – especially on top of ableism. My doctor’s assumptions that I would be having kids or that I needed access to certain contraceptive needs, were small ways in which my queer identity felt even less respected.

As a straight “passing” person, having MS also heavily impacted my feelings of invisibility – as if this was yet another identity that I had to “come out” for. Coming out with multiple sclerosis and coming out with being queer involves similar feelings and possible invalidation. My experiences outside of medical settings (especially in social settings), are often a reminder that both my queer and disabled identities are invisible. I pass for both straight and non-disabled so that, I often feel that I can only be truly understood and acknowledged by verbally giving my backstory – which is exhausting.

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This photo captures me sitting in the U of M infusion center waiting room. I am waiting for my weekly 4 hour infusion of tysabri ( a MS treatment). Though I go every month, the receptionist always asks if I am there to get blood drawn. She assumes, that because of my age and my visible “able” appearance that I am healthy.

During my treatments, I often feel discouraged and overwhelmed however, today, I intentionally wore my rainbow socks for encouragement and a reminder that I am more than my MS or my treatment.

Simultaneously, I understand that many people with MS are not so invisible, especially if they are people of color. People with MS who use mobility devices, have speech differences, significant mood swings, or anxiety and depression are often hyper visible, especially if they are people of color and/or from low socioeconomic backgrounds. Disabled people of color are criminalized, demonized, and murdered for having disabilities, while I am mostly validated and supported. Being both visible and invisible is a simultaneous privilege and safety concern.

3. What are important skills for engaging community systems and encouraging the participation of community members with attention to their diversity and for reducing barriers to that participation in your area of interest?

Having multiple sclerosis and becoming more apart of the disability community has forever shaped how I will engage with all community systems, regardless of disability. I have learned that accessibility is one of my most central values (both professionally and personally). I have retrained my brain to constantly reflect on if I am being  accessible beyond physical needs. Is my presentation, my activity, my communication, accessible to multiple attention spans, learning styles, socio economic backgrounds, cultural capital, languages etc.. As a social worker engaging communities of multiple abilities and access needs everyday, I must remain aware and mindful of my role in ensuring community engagement through making my practice accessible to the communities I work within.

Additionally, I have learned of the importance and power of celebrating disability, as we may think to celebrate or value any other identity. Prior to my own diagnosis, I never understood how disability could be anything more than a burden, especially those that are life threatening. That being said, I have learned to be even more proud of my accomplishments because I succeeded with MS,  despite the stereotypes and assumptions that accompany disability. Of course, individuals will always have different relationships and understandings of their identities however, it is crucial that we do not assign our own values to how someone experiences their identity as outsiders.

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This photos features me holding hands with my partner during an infusion. Though this seems like a small detail of my life with a disability, I took this photo to normalize my experiences and, represent the time I have taken to slowly share about my disability with loved ones. By sharing about my disability with others, I am reclaiming how I want to understand and live with a disability – without secrecy or shame.

Lastly, as social workers, it is important to acknowledge the history of social workers when entering communities of disabled people or working with people with disabilities. Social workers, like with many other communities, have a history of devaluing and invalidating disabled people. If you are a non-disabled social worker working with disabled communities, you must acknowledge that you represent a history of oppression and medicalization that continues today.

4. How do social work ethics and values guide practice with community and social systems in your area of interest?

In reflecting on the Social Work Code of Ethics, dignity and worth of the person, as well as cultural humility, first come to mind as guidance for my practice (NASW, 2018). Despite the history of social workers in working with people with disabilities, social workers must center the disabled community in telling our own stories and expressing our needs/wants. Through the institutionalization and medicalization of disabled people, disabled people are often denied agency over their bodies and lives. However, as social workers we have strong commitments to upholding the dignity and worth of the person by assuring that our work is client/community centered, despite ability. Additionally, social workers have an obligation to be culturally sensitive (NSW, 2018). Despite this, non-disabled social workers often have limited knowledge about the disability community as a whole, as well as disability sub committees. This is evidenced by the lack of disability education in schools of social work curriculum. This is an ethical obligation that I hope to further promote.

5. What did you personal learn from this assignment? What is your assessment of your ability to engage in practice within your area of interest?

This is a reflection on my personal experiences that I never would have participated in outside of this class. As a social worker with a disability, I do not often see my disability represented in curriculum or class activities. I did not learn about disability culture until I searched for classes outside of the school of social work. Additionally, I learned that it feels rewarding and empowering to share some of my personal story. Social workers are often not encouraged to share about themselves, as we often take the role of watchers and listeners. That being said, I feel that telling my story is a powerful tool is social justice work, and even models as an example for others.

Though I identity within the disability community, I can not claim to be an expert or have extensive knowledge of how to engage in practice with disabled people. Disability is as multifaceted and diverse as the vast variety of racial/ethnic groups and therefore, full competence can never be attained. That being said, I am confident in my role and ability to listen, use respectful language and terminology, and continue to develop my knowledge of disability through reflection and experience. As an insider to this community, I am eager to use my knowledge and experiences of disability to educate non-disabled people and improve the social work professions engagement with people with disabilities.

That being said, I will need to continue to build my knowledge on what disability may look/feel like for non-white communities and how, as mentioned above, whiteness has influenced my experience with disability. As disability is understood and explained in cultural contexts, my understanding of it is limited to middle class white U.S norms. Additionally, I would like to explore privilege within disability culture. What disabilities are prioritized and valued, while other disabilities continue to be pathologized? How do I continue to benefit from albist systems that prioritize my ability or perceived ability?

References:

National Association of Social Workers, (2017). NASW Code of Ethics. Retrieved from:

https://www.socialworkers.org/LinkClick.aspx?fileticket=ms_ArtLqzeI%3d&portalid=0

 

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8 thoughts on “Final Project: Photovoice exploring invisible disability

  1. Hi Matoaka, thank you for sharing your experiences with the multiple invisible identities you hold – I learned a lot from reading your post and was really moved by it. I know it is not your responsibility to educate others on what it is like to live with a disability, but I appreciated the insights you shared on your experience. Your assessment that you’ve never felt more aware of white privilege than in the healthcare system was powerful to read and reflect on. Thank you for everything that you shared, I imagine it was not easy to do, and I really appreciated your reflections on the ways in which ability status is not acknowledged or taught or discussed enough in social work classrooms. I agree with you, and unfortunately have found the same experience in my MPH courses as well.

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  2. Dear Matoaka,
    I am so proud of you. This post is so profound and beautiful. How did you get so wise?
    You have come so far.
    Thank you for sharing your story. Mom

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  3. Matoaka, First, thank you for sharing your personal story. It captures so much and I am particularly impressed with your balanced view of looking at oppression and privilege, particularly when exploring your multiple identities. You also capture the concepts of this class so well in your reflection. Really, this post is academically excellent and deeply touching at the same time. I only wish you the best as you continue to navigate your invisible disability and other identities. I know that others will benefit from your story. I also understand that this might mean “coming out” to a broader audience, but with your permission, I’d like to repost this blog on my site. Let me know if that is ok with you!

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    1. Mike,

      That you so so much for your kind words. I would be SO honored to be featured on your blog and am so appreciative of your comments. I went into this blog post having no idea how powerful it would feel to write. Thank you for validating my story and reflections.

      Best of luck with your continued move and life transition!

      It was pleasure to be in your class.

      On Wed, Apr 25, 2018 at 9:29 AM, Matoaka's 697 Blog 2018 wrote:

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  4. Hi Matoaka, just wanted to say a quick thank you for sharing your story with us. Your reflection was beautifully written, and incredibly moving to read, and helped me gain a new understanding and awareness of invisible identities. Thank you so much for sharing, and congratulations on graduating!

    Liked by 1 person

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