The Unseen Emotional Toll of Self-Advocacy Disabled Folks Are Paying
By Devrupa Rakshit, Revival Disability India
“When the world is silent, even one voice becomes powerful,” Malala Yousafzai, the renowned advocate and activist for female education, once said. Indeed, self-advocacy — an important tool for achieving equality and justice — is an empowering practice. Unfortunately, however, for many disabled, neurodivergent individuals, this empowerment comes at a price — one that can adversely impact their mental and physical well-being as they navigate the complexities of asserting their rights in a world designed for their able-bodied, neurotypical counterparts.
Manifesting as anything on the spectrum of disbelief and dismissal on social media to the withdrawal of crucial support and care, the burden of this tax is as immense as it is invisible. “People usually don’t like the fact that I am vocal [about my disability]. Some of them have admitted to feeling that I’m lying,” says Pranav Sethi, 34, an autistic self-advocate from New Delhi who works as a climate and disaster risk mitigation specialist. The skepticism Pranav faces might appear harmless enough. Still, given how common it is for late-diagnosed autistic individuals to experience internalized ableism, it can add an extra layer of stress to an already challenging situation and negatively impact their mental health. Research has shown that invalidation of people’s pain can propel them further toward depression–a condition already alarmingly common among autistic and disabled individuals.
Yet, the dismissal Pranav faced is too common — more so for women and queer folks whose lived experiences are routinely dismissed by both clinicians and caregivers, often with added microaggressions and patronizing behavior to boot. Recounting her experience, N.P., 35, a project manager from India, says, “I explained [to a relative] how India is too overwhelming and overstimulating [for me], and I am a lot calmer in Canada. They didn’t buy it.” In the process, they not only undermined her efforts to manage her mental health in a way that actually helped her but also threw in some unsolicited advice: “You get agitated too easily. You should meditate.” Interestingly, a meta-analysis of 83 studies — involving over 6,000 participants — showed how meditation and mindfulness can trigger adverse effects — including depression and anxiety — in some neurodivergent people.
But the fact remains that we don’t trust women to know what works for themselves. As Kristian Bulliner, a therapist from Illinois, notes, “When you learn to advocate for yourself, you are taking agency over the outcome of your life. You step in the driver’s seat and begin to identify where you are going, why it matters to you, and how you will get there.” In a world where we needed a global campaign as recently as 2018 to ensure women can legally drive cars, it’s hardly surprising that society still scoffs at the very idea of women taking control of their own narratives.
When speaking up about your lived experience leads to isolation
Social isolation is yet another ramification disabled folks encounter when speaking up about their experiences, needs, and rights — exacerbating feelings of loneliness and depression and creating an ironic, vicious cycle where the emotional toll of battling for greater accessibility leads to further withdrawal and disengagement.
Describing an instance of familial expectations and personal limitations clashing, Pranu, a 25-year-old student, says, “My parents feel offended when I talk about my disability… Whenever I say I’m tired, they take it so personally, and say that if I somehow manage to have conversations with friends and spend time with others, then I’m simply neglecting them.”
Many disabled and neurodivergent people already experience high degrees of social isolation — either because their disability intersects with other marginalized identities like race and queerness or simply because most able-bodied, neurotypical individuals in their lives cannot relate to their experiences. When they decide to assert their needs and boundaries expressly, their existing social dynamics can be strained even further — compounding their struggles with mental health, research shows.
“Being vocal about my neurodivergence has cost me three many jobs and one friend,” says Dr. India Ashok, 35, a neuroqueer neuropsychologist. Ashok’s loss of employment and friendships highlights the tangible and severe repercussions of self-advocacy — especially in a world where the unemployment rate among neurodivergent folks is already somewhere between 30–40%. This economic strain adds to the stress and anxiety experienced by disabled individuals, making it harder for them to sustain their advocacy efforts.
While social isolation and lack of professional opportunities are documented as a standard cost of activism and advocacy in general, for disabled folks, the withdrawal of support systems can have grave consequences — impacting not only their quality of life but the extent to which they can participate in society. “Living with a disability can be hard. Not only can it be hard for obvious reasons but living with a disability comes with its own trials and tribulations that many do not think of… Since living with a disability and observing others with disabilities, I can honestly say that the support we receive from others can have an impact on how well we can adapt to difficult situations with our disabilities,” Chelsea Danae, living with Erb’s palsy, wrote.
“When [disabled] people do not advocate for themselves, they may be pushed to do things that don’t feel right to them or become depressed. They may also lack self-confidence and feel as though their life is out of their control,” the website of Covey, a non-profit organization based in the U.S., states. Between the devil and the deep sea, then, self-advocacy might seem like a better option — to those who can afford to bear its emotional cost. It becomes important, then, to explore if there are ways to mitigate the impact taking agency of one’s life can have on emotional well-being.
Care and advocacy: strategies to consider
Community-based support groups –whether run by the government or by other disabled citizens and their caregivers– are one alternative, according to Covey. These communities of care — whether online or offline– can offer emotional support, practical advice, and a safe space to share one’s challenges and successes in advocacy. They also become avenues for connection and solidarity –something a self-advocate may have had to sacrifice in the process of finding their own voice against society’s ableism.
A South African study on the core strategies one can implement to advocate for themselves suggests doing so “in person, [through] written strategies, and through engagement on social media.” This doesn’t mean that every self-advocate must practice all these strategies in their advocacy — selecting even one that causes them the least distress while choosing a frequency that costs them the least emotionally, is more than enough. It might feel like a drop in the ocean, but as we’ve been told time and again, “Little drops of water make a mighty ocean.”
Another piece of advice from The Ability Toolbox — a support community for people with disabilities, chronic illnesses, and mental health conditions — is to not only learn about one’s own needs, strengths, and challenges to able to figure out the most sustainable way for themselves to advocate, but also to, “Do your research.” The onus of doing so shouldn’t be on us alone, but in a world where many disabled folks don’t have the luxury of trusting anyone besides themselves, it’s an unfortunate, but quite essential part of taking agency of one’s life. This lack of trust also means that one must aspire to be as prudent as their disabled minds and bodies — and, of course, their spoons, allow. In line with The Ability Toolbox, Revival Disability India, too, learned from their experiences and advised other collectives, “[P]lease make sure to prioritize clear, written agreements for all collaborations and to ensure that venues are fully accessible. Do not rely solely on verbal assurances or informal communications.” Implementing these strategies may enable disabled individuals to navigate the complexities of self-advocacy more effectively — but the cost never completely goes away.
You have the right to your own voice
Having said all this, it is important to note that self-advocacy is an important instrument of self-actualization. “[It lets you] get in touch with who you are, what you like, what you want, and why it’s important to you. Once you have a grasp on those things, it is much easier to communicate your needs to others and you feel more in touch with yourself,” Bulliner explained. “When you advocate for yourself, you are communicating to yourself and others what you value and your worth… [it] means you have defined what makes you feel whole, what you need to function as the best version of yourself, and how to maintain a life that is sustainable for you.” Denying one the right to self-advocacy, then, also denies them their right to have their own voice.
The cost of advocacy isn’t just an individual burden; it has broader societal implications. When disabled individuals face backlash for advocating for themselves, it discourages others from speaking out — perpetuating a cycle of silence and marginalization that hinders progress toward equality and inclusivity.
About the author
Devrupa Rakshit (she/they) is a neurodivergence consultant and award-winning multimedia journalist from India. She’s currently working with Revival Disability India as the organization’s Community Coordinator and Communications Strategist. She has previously in The Swaddle’s editorial team, and has also worked with UN Women India. You can find her on Instagram at @devruparakshit.
