After listening to a podcast about how we come to understand ourselves, I reflected on how, as a disabled person, I have lived beyond all expectations for my life. In fact, since I turned 38, I have lived exactly 30 years past the life expectancy handed down to me by an orthopedist.
The doctor told my grandmother that I would not make it beyond 8 years old. I can only imagine her reaction to hearing such news. Now that she has passed, I look back at the life she gave me, and I know that the uncertainty of my mortality undeniably influenced the unwavering care, love, protection, and intention she bestowed upon me.
The medical profession tends to harp on the “unfavorable” outcomes that may occur for disabled children—especially if the disability is detected in utero, as it was for me. Medical professionals notoriously do not offer positive or favorable responses to families about their options. This approach from the medical industry influences how prospective families may view disability broadly and, more specifically, how they see their disabled offspring. The approach also lacks a holistic view of disability that doesn’t lean entirely into hardship.
Yes, there is a lot to consider when deciding to have disabled children, but pushing past ableism has a profound effect on the lives of disabled people. Our society fails to support families of disabled children, especially as it relates to accessing quality care and supports that can ensure our health and wellness are truly prioritized. In the U.S., our health care system fails disabled people throughout their lives. This includes pricing low-income families out of specialized treatments and forcing these families to navigate blatant ableism and medical racism while their care needs are often disregarded by “professionals” who don’t see why their lives deserve quality care at all.
Knowing all of this makes me deeply appreciate the quality of life my grandmother pushed for me to have. She was my first advocate—something that, sadly, not every disabled child has.
When talking to me about the doctor’s prognosis for my life, my grandmother often said, “The doctors don’t know God’s plans.” It would have been so easy for her to project her fears and worries onto me. Instead of leading with uncertainty, she did the opposite: She loved me fiercely and trusted in a higher power. My grandmother never pushed her reservations onto me, even when I embarked on journeys that she never saw someone like me do.
When I was in high school and considering college like my nondisabled peers, she never said that college wasn’t for me. She supported my desire and even called me her “gift from God” because I came into the world after a difficult period in her life. Part of me believes that she viewed me as “saving” her from her heartache and loss and that she saw it as her duty to be fully present for me. For many disabled people, it is rare to have family and caregivers who don’t impede their dreams. Many of us must also unjustly shoulder the worries of our family members and caregivers, taking them on as our own when they’re not ours to carry.
While writing an article that centered Black disabled women and their parenting journeys, I still recall the instances of ableism they experienced regarding their pregnancies—ableism that came from their families and medical professionals who thought they could foretell what their lives as disabled parents would look like. In such a life-changing time, they unfairly shouldered and had to push against ableist rhetoric about their ability to parent. The naysayers create unnecessary stress because we have the gall to decide to parent—a decision the nondisabled make everyday while never facing the same level of scrutiny. Apparently the rules for us are different.
My grandmother didn’t have a blueprint for raising me, but as I approach 40, I realize my existence can serve as a blueprint for others who look like me. I am a model for what approaching midlife as a Black disabled woman looks like. I’m certainly not the first or only disabled person who has exceeded their life expectancy. In fact, finding a community of other Black disabled women approaching midlife and defying their life expectancies makes this journey less scary. Part of what they have helped me realize is just how lucky I have been to have certain advantages. I was raised by an emotionally stable and present adult who cared for me fully; I had a supportive school environment, doctors who ensured I received the health care I deserved, and a community of elders who valued me. If any of those factors were different, my life trajectory would have been different too.
Understanding that many of us are the models for others with disabilities who are in their 30s, 40s, 50s, and beyond is truly an honor. I want people to learn from me, and telling my stories is empowering. If just one person hears something in my life story that positively impacts them, then speaking my truth has done its job.
Getting older as a disabled person feels more like a privilege than a setback. I know so many disabled comrades who passed before they reached the age I am now. Death and grief are too commonplace for us. Each year, I feel that my disabled circle gets smaller and smaller as someone else I connected with over the course of my life dies. It’s jarring to know that getting older is a privilege for us, and it pains me that we must navigate grief and loss so much more often than nondisabled people. For those of us who are “lucky” enough to grow older, we become the disabled elders that are so desperately needed.
I look at aging as a blessing, and I had many different kinds of models for being, especially growing up around many widows. Seeing Black women in their 60s, 70s, 80s, and 90s live alone and create community with each other showed me what is important in the golden years of our lives. I see many people grappling with the question of who will care for them when they’re old—especially when they don’t have children. I’m here to tell you: Building a community is how many of the women I knew survived. Some had kids, some didn’t. But they knew how to look out for each other as their bodyminds and abilities shifted. Community is vital for survival, and having kids isn’t a foolproof plan for care. In fact, many people have children and must still find alternatives for support as they age.
Seeing my grandmother and those in my neighborhood live rich lives that accommodated their health and social realities made getting older less scary. They are my blueprint for aging as a Black woman, and their examples mean even more to me since all of these elders in my life transitioned on.
I do not allow fear to take root as I get older in this disabled body. I’m aware of what could happen, and I have people to whom I can ask questions. Whether hereditary or related to disability, I am taking care of the health areas I need to pay attention to.
In 2023, I began working out again and going to therapy. I want both my body and mind to be well in all the ways that are possible. I have already noticed subtle and profound changes in my movement, I no longer store stress in my body, and I’m more able to quickly ground myself during frustrating moments. My motto is to be proactive in the things I can control. Keeping this crippled yet capable body is something I can do for as long as I am able to. I cannot fully predict what aging will entail, but I can do what’s within my power to create more ease and care for a body that will age in its own unique way.
My very existence bucks against societal expectations and barriers that seek to prevent disabled people from thriving and finding the beauty in our bodyminds. My mere presence counters popular notions about what someone like me should or cannot do. No one has the right to define me but me. My grandmother taught me this, and it’s something I try to emulate when I meet other Black disabled women who are trying to push against the narratives they have been told about who they are and what they are capable of.
Living 30 years beyond my life expectancy is both an act of defiance and a blessing. I am here, and I am thriving. I will continue to welcome getting older. I know some—including health care professionals—did not expect me to make it this far. I am someone who enjoys being unpredictable—especially when it comes to other people’s standards. I pray that aging as a disabled person continues to give me the ability to defy expectations. After all, aging doesn’t scare me; people’s ignorance and ableism about disabled people do.
By exceeding my life expectancy, I’ve become a model for other Black disabled women is a story from Prism, a BIPOC-led nonprofit news outlet that centers the people, places, and issues currently underreported by national media. Please consider making a tax-deductible donation to support our work today.
