379: Building a Meaningful Life Through Uncertainty: Lessons from Disability Culture

379: Building a Meaningful Life Through Uncertainty: Lessons from Disability Culture

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[00:00:00] If you're a loyal listener, you probably know by now that over the last few months, my family has been navigating a really hard season as parents. My child has been really sick. We initially didn't know what was wrong. We thought it was an acute illness, and then after several medical appointments, seeing multiple doctors, going through several tests and procedures, he was recently diagnosed with an autoimmune disease, and part of his treatment requires that he receive three-hour infusions.

By the time you're listening to this episode, he has already had his first infusion and will probably have had his second as well. And I just wanna mention that a diagnosis like this is something that changes a family. It changes your routines, your priorities, even potentially your lifestyle. It also [00:01:00] changes your relationship with uncertainty.

It changes your temporality, meaning your sense of time and how you relate to it, how you relate to the future, to planning, and what comes next. And it also changes how you think about the future, because there's a good chance that you didn't imagine this as part of you or your child's life. And like many parents navigating a major medical diagnosis, I'm experiencing grief, fear, overwhelm, exhaustion, and a thousand questions that I'm trying to make sense of through my own research skills.

And I'm grateful. I'm grateful that I have the privilege of having a PhD and that I can use those skills to learn as much as I can about my kid's diagnosis. And then I've also found myself asking different questions, especially around meaning, identity, what it means to adapt to a life that has [00:02:00] changed in ways that you didn't expect.

And while there are many things that we can't control, I'm reminded that there are still choices we get to make about how we respond, adapt, and care for one another, especially in light of the fact that I'm also navigating my own chronic illnesses. One of the things that has helped me to cope during this season, alongside therapy and confiding in friends and loved ones, has been reading.

Two books in particular have been especially helpful. The first is Unfit Parent by Jessica Slice, and the second is Keep Your Head Up by Dr. Tasha Faruqui. And just quickly, I wanna shout out Nina Rodriguez, the host of the Grief and Life podcast, for that latter recommendation. These books are giving me language, frameworks, and stories that are helping me to think through concepts like grief, joy, acceptance, [00:03:00] identity, adaptation, accessibility, interdependence, and perhaps most importantly, disability culture, which offers a powerful lens for understanding many of these ideas and experiences.

So today, I'm going to share some of these reflections with you and how they can help you rethink your relationship to your work and life. We'll talk about disability culture, grief, joy, identity, adaptation, accessibility, interdependence, and self-determination. And we'll also talk about why I believe these ideas have something to teach all of us, whether you're navigating grad school, a demanding career, caregiving, chronic illness, burnout, major life transitions, or simply the realities of being a human in this very messy world.

[00:04:00] Welcome to the award-winning Grad School Femtoring Podcast, the place where first-generation BIPOC students and professionals can listen in on inclusive grad school stories and gain practical tools for sustainable success. This is Doctora Yvette Martinez-Vu, a certified coach, consultant, author, and speaker.

I will be serving as your femtor, providing you with insider knowledge to help you thrive in grad school and beyond.

Welcome back everyone to another episode of the Grad School Femtoring Podcast.

This is your host, Doctora Yvette. Today, we're talking about what disability culture teaches us about building a meaningful life even with uncertainty. And I'm gonna start with what disability [00:05:00] culture is, specifically how we can try to define it. And I wanna mention here that for a lot of people, disability culture is hard to define or impossible to define because it encompasses a population that is large, diverse, and not defined by one single experience.

The way that I experience my chronic illnesses, my neural divergence is very different from someone else, even if they have the same conditions as me. But for the purpose of this episode, I'm gonna pull a definition from the Encyclopedia Britannica, which mentions that disability culture refers to shared values, practices, forms of expression, and community that emerge from the lived experiences of disabled people.

Disability culture can take different forms across cultures, geographic regions, and historical periods, but it's also often understood through a few overlapping areas. One [00:06:00] is historical, and this includes art, literature, poetry, language, stories, and communities that disabled people have created over time.

Another is social and political. This recognizes disabled people as a marginalized group and emphasizes values such as justice, self-determination, collective action, and the pursuit of equity and inclusion. Another is personal and cultural, and this focuses on disability as a way of being in the world and on the development of positive disability identity, pride, and belonging.

And so what I'm sharing today reflects my own understanding as someone who is neurodivergent with chronic illnesses and also as someone who is a parent, caregiver, coach, and advocate in my own ways. I will not claim that I'm an expert on the topic, and I actually wanna reference two other episodes from my podcast if you wanna learn more on the topic of [00:07:00] disability justice and on the topic of anti-ableism.

For disability justice, I strongly recommend you check out episode two seventy-nine on Queering and Cripping Academia with Doctors Pau Abustan and Shayda Kafai. And I also recommend episode three oh seven on how to be an anti-ableist advocate in higher ed with Dr. Janelle A. Johnson. So let me get back to what I was referring to, which is that one of the things I've come to appreciate about disability culture is that it offers more than conversations about diagnoses, accommodations, or healthcare management.

It offers a way of understanding life. Because in many ways, disabled people are forced to learn how to navigate uncertainty, how to adapt to changing circumstances, and how to make meaning of a life that does not fit what [00:08:00] dominant culture often deems worthy or valuable. For example, many of us are raised to believe that independence or even hyper-independence is the ultimate goal. We're raised to believe that self-sufficiency is the goal, that you shouldn't have to ask for help because needing support somehow makes you weak, and we're also told that productivity, output, and usefulness determine our worth.

Disability culture instead asks us to consider a different way of being. It can ask, "What if interdependence is part of being human? What if needing support is a natural part of life? What if adaptation is a strength? What if accessibility benefits everyone?" And what if there are parts of life that will always exist outside of our control?

Then what? One of the things disability culture has taught me is that control is [00:09:00] often a much smaller part of life than many of us would like to believe. Disabled people regularly navigate changing bodies, changing circumstances, inaccessible environments, uncertainty, and limits that cannot simply be overcome through more effort or determination.

As a result, disability culture has cultivated rich ways of thinking about adaptation, participation, accessibility, community, and care. Because when so much exists outside of our control, we can focus on what is within our control, which includes how we respond, how we care for ourselves and others, how we adapt, and how we continue participating in our lives even with changing circumstances.

That's where disability culture has been a powerful teacher for me. I remember telling someone close to me recently that when my child was [00:10:00] first diagnosed on the autism spectrum ten years ago, I knew very little about autism, neurodivergence, disability, or advocacy. And I remember I didn't know anyone else around me with a child who was experiencing the same thing as my child, and I was afraid.

I was a different person then. Over the past decade, I've spent years learning from others and strengthening my own self-advocacy skills. And while I never would have chosen an autoimmune disease diagnosis for my child, I can see how those experiences have prepared me for this moment. Thankfully, I now have language for understanding what's happening, frameworks for navigating uncertainty, and a community of folks that I can lean on, people who are part of the reason I was able to get a diagnosis for my kid to begin with.

All of this to say that disability culture [00:11:00] itself has been a source of wisdom and strength for me in this season, and it can be for you too.

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Now I wanna transition to talking about grief and joy and how they can coexist because that's something that's coming up for me right now.

When many people hear the word grief, they immediately think about death. And of course, grief includes death. I know that kind of grief all too well. I've known it since I was very young. But grief is much broader than that. Now when I think about grief, I think about the grief of the life we never imagined that is no longer our reality, or grieving identities that we once held, or grieving old plans, expectations, relationships, and versions of ourselves.

For most of twenty twenty-six, grief has been a frequent [00:13:00] companion. There is the grief when you hear about a loved one who overdoses. There is a grief when a loved one's child experiences a tragic accident. There is a grief when a loved one miscarries. There is grief when someone you love wants to see you, and you want to see them, but you are both too chronically ill to travel to one another.

And of course, there's so much grief in witnessing your child suffer in pain and having to adjust to a childhood that includes medical appointments and hospital visits. And yet alongside that grief, there has also been joy. The joy of a family member being found alive by a kind stranger and continuing to survive.

The joy of a loved one's child having a full recovery after their accident. The joy of someone carrying a pregnancy into the second trimester and hoping and planning for a [00:14:00] better outcome. The joy of sending a loved one a podcast-length voice memo to remind them that you're only a phone call away. And the joy of finally having answers and your child starting to feel better after months of pain and uncertainty. All of this means that grief and joy can coexist, and they often go hand in hand.

I can grieve the challenges my child faces while also feeling grateful that treatment exists. I can mourn what has changed while also celebrating what is still the same. I can be afraid about the future while also feeling hopeful. Disability culture helps me understand that as human beings, we are capable of holding multiple feelings and truths at once.

We can feel grief and joy on the same day, sometimes at the same time. And I wanna giggle there because there have been so many moments [00:15:00] where I have laugh-cried in this season, and this might be true for you too, no matter what you're going through. If you're also navigating a hard season, I want to remind you that life is rarely about one thing at a time.

It can be multiple things, and we can choose to hold onto what's in our control and make room for hope and joy, even in the middle of pain and uncertainty. And just as life is rarely about one thing or one feeling at a time, we are also not one identity. We hold many identities simultaneously. This prompts me to ask, "Who am I, and who am I becoming through this experience?"

Because major life events don't simply change our schedules, they change us as people, too. In processing my kid's diagnosis, I'm also becoming someone new. I am now a parent of a child with a chronic illness, and I am [00:16:00] becoming someone with a different relationship to uncertainty, someone who understands disability more intimately than I did before.

And to bring it back to you, many of us experience versions of this throughout our lives. Grad school changes you, parenthood changes you, caregiving changes you, disability changes you, and of course, loss, too, changes you. For me, experiencing a life and identity change means that instead of spending all my energy trying to return to who I was before, I'm leaning into curiosity more about who I'm becoming now.

This is where the concept of acceptance has become important for me. When I use the word acceptance, I'm not talking about giving up. I'm talking about acknowledging reality as it exists today and releasing the expectation that life should look different than it does right now. So instead of [00:17:00] dwelling in resistance, I'm trying to meet my reality honestly and decide how I want to respond.

Acceptance helps us honor our reality while creating space for adaptation. And adaptation is one of the concepts that disability culture understands exceptionally well. Many disabled people have to navigate inaccessible systems, and that means developing creativity, flexibility, and problem-solving in order to move through the world.

And through that process, you may learn skills that extend far beyond disability itself. You may become more creative, resourceful, flexible, capacity aware, and even more able to problem solve. And guess what? Those are skills I teach to my coaching clients as well. Those are skills that can be helpful in leadership roles, in grad school, in parenting and caregiving, too.

So I want you to think about [00:18:00] how your own identity is changing in this moment. What is life asking you to adapt to? And how might acceptance, adaptation, and support help you participate more fully in your life as it exists today. Another idea I've been reflecting on is accessibility.

Many people think about accessibility as ramps, elevators, captions, or school and work accommodations. And yes, those things are incredibly important, but accessibility refers to more than that. It refers to creating conditions that support meaningful participation. That means asking questions like: What would make participation possible or easier for more people?

What support would help more people? What barriers can be reduced in this space? And these questions can be applied almost anywhere, in your [00:19:00] workplace, in a grad school classroom, or even in your home or community spaces. And you don't have to do it perfectly either. Accessibility is not about creating a perfect environment that meets every single person's needs.

Instead, it's a practice of paying attention, listening, adapting, and responding to people's needs as best as we can with the resources that we have. Sometimes we'll get it right. Other times, we may miss something. I'm guilty of that too. And sometimes our needs will conflict, but the goal is to make an effort to create more opportunities for meaningful participation, belonging, and support in the spaces we're part of.

This also ties to interdependence, because when we think about accessibility, we're also thinking about how we all rely on one another to participate in spaces in meaningful ways. We all need support, and we all contribute to support, too. [00:20:00] None of us are fully independent, and you're probably reminded of that truth the most when you're having a hard season.

In my case, we have benefited from doctors, nurses, therapists, friends, family members, mentors, coaches, and countless others. Again, we all need support. Some of us need more support at certain times than others. And needing support also reminds me of the concept of self-determination. Researchers Brianne Tomaszewski, Laura Klinger, and Cara Pugliese, I hope I'm saying that right, if not, I'm sorry.

They define self-determination as an individual's capacity and opportunity to make choices, set goals, make decisions, and act as an agent in shaping their own life. Put more simply, self-determination means having agency and a meaningful say in the [00:21:00] decisions that affect your life, even if you're someone with higher support needs.

Disability culture reminds us that support and agency coexist. You can need support, live an interdependent life, and still have a sense of autonomy. So I've been talking about all these concepts, grief, joy, acceptance, adaptation, accessibility, interdependence, and self-determination. And of course, as I was preparing for this episode, I asked myself, "What does this all have to do with grad school?"

My podcast is called Grad School Femtoring after all. And what does this have to do with work? What does this have to do with personal development or sustainable productivity? And I arrived at this idea. So many of us are pursuing career and life goals in systems that require us to keep pushing harder, working longer, and doing [00:22:00] more.

But disability culture offers another possibility. What if we approached our goals in ways that made them more accessible? What if we pursued our goals in ways that honor our current energy and capacity? These are questions that can lead to more sustainable outcomes. For grad students, this might mean updating your timeline, requesting accommodations, using accessibility tools, breaking projects down into baby steps, or finding a more supportive mentor.

For professionals, it might mean reassessing your workload, delegating responsibilities, setting stronger boundaries, and creating systems that support energy management. For my caregivers, it might mean accepting more support and resources from others. It might mean adjusting your expectations and even doing what you can to make more room for [00:23:00] rest.

You deserve it. And for all of us, it might mean recognizing that the goal is not to do things perfectly. The goal is to build a life that is meaningful, sustainable, and responsive to your current reality. Or at least that's my goal. You let me know what yours is. As I close today's episode, I want to return to where I started.

I'm still navigating a hard time. I'm not exactly sure what my new normal looks like, and it's gonna take some time for me and my family to adjust to these changes. But what I do know is that I have what I need to navigate this, and if I don't, I will figure it out, and I can lean into disability culture to offer me language, perspective, and wisdom that I need to continue living a meaningful life and doing meaningful work, even when faced with a reality that I may not have imagined for my family.

[00:24:00] If there's one thing I hope that you take away from this episode, it's that you can build a meaningful life alongside difficult realities. We may not get to choose every circumstance we face, but we can choose how we respond, how we care for ourselves and others, and how we continue participating in our lives.

That lesson is helping me navigate the season, and I hope it offers something valuable for you as well. If this episode resonated with you, I would love to hear from you. It always means so much when I hear from my listeners. And if you're looking for additional support, whether through coaching, consulting, or a speaking engagement, you can learn more about my work at the links in the show notes.

That's it for today, and as always, I'll talk to you all next time.

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