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Q: Hi Meera, thank you for sharing. You mentioned that schools weren't really prepared to support you. What was that actually like for you on a day-to-day basis?

Meera: For me, it’s a daily medical reality—managing Clean Intermittent Catheterization (CIC), diaper use when necessary, and the constant risk of UTIs. But society treats these topics as unspeakable, leaving me without open support or accommodations. Growing up, accessible toilets in schools were rare, and staff had very little understanding of why I needed extra time or privacy. Because of that, it led to embarrassment and isolation rather than support. 

Q: You talked a bit about healthcare—is it hard to find the right doctors or get the equipment you need, like your wheelchair?

Meera: Yes, the healthcare system is very fragmented. Finding doctors knowledgeable about long-term spina bifida management has been difficult. Many patients undergo repeated surgeries without adequate education on bladder management or rehabilitation. On top of that, physiotherapy and customised wheelchairs are frequently unavailable or just too costly. Without affordable rehabilitation, we are left at risk for preventable secondary complications like scoliosis, kyphosis, chronic pain, and pressure injuries. 

Q: You mentioned there's a "near-total silence" about being a woman with a disability. Can you explain what you mean by that and how it affected you growing up? 

Meera: Topics like menstruation, body image, relationships, sexuality, marriage, and pregnancy are rarely discussed with women with disabilities. It’s based on the false assumption that we don't share the same aspirations as other women. Growing up, I rarely saw women with disabilities represented as students, professionals, wives, mothers, or leaders—and that lack of representation leads many girls to quietly give up on those dreams. 

Q: What are the biggest physical or social barriers you run into in your daily life?

Meera: The built environment is a massive barrier. Public transport, restaurants, cinemas, malls, changing rooms, and workplaces frequently fail to consider wheelchair users. This isolates women not because of their disability, but because of unnecessary societal barriers. When it comes to employment, despite having the skills and determination to succeed, women like me are rarely encouraged toward higher education, leadership, or meaningful careers. This limits our financial independence, which is so closely tied to dignity and confidence.

Q: Dealing with all of this—the medical stuff and just how society reacts—must be really exhausting...

Meera: Yes, it is! It really takes a toll on my mental health. The combination of repeated medical procedures, physical pain, social isolation, and discrimination really affects self-esteem. But I don't think these things are often considered when thinking about the needs of disabled people. Things like peer support and counselling are still treated as optional, but I see them as essential parts of care.

Talking openly about CIC, bladder management, menstruation, relationships, pregnancy, and mental health should not be considered uncomfortable. These conversations save lives, protect dignity, and improve quality of life.

Spina bifida is a congenital condition in which the spine and spinal cord don't form properly, occurring when the neural tube fails to close completely during early pregnancy. Its effects vary widely depending on severity and location:

• Physical Effects: Depending on severity, it can cause varying degrees of lower-body paralysis or weakness, requiring mobility devices such as wheelchairs, braces, or crutches.

• Neurogenic Bladder and Bowel: Because the nerves controlling the bladder and bowel are affected, most people with spina bifida require ongoing management strategies like Clean Intermittent Catheterization (CIC) and bowel programs to stay healthy and prevent infection.

• Secondary Complications: Without early rehabilitation and proper seating/posture support, individuals are at higher risk of scoliosis, kyphosis, chronic pain, and pressure injuries — complications that are largely preventable with early intervention.

• Associated Conditions: Many people with spina bifida also have hydrocephalus (fluid build-up in the brain) and may require a shunt; some experience learning differences that need tailored educational support.

• Lifelong Condition: Spina bifida requires lifelong, multidisciplinary follow-up — not a one-time surgical fix — spanning urology, orthopaedics, neurology, physiotherapy, and mental health support.

Q: Thanks for the introduction, Dr. Raghav. You mentioned using a wheelchair for anything beyond short distances. How does this impact your daily navigation? 

Dr. Raghav: Because the weakness initially affected my legs, tasks that were once manageable—like walking, climbing stairs, and standing for extended periods—became increasingly difficult. Now, I have to rely on my wheelchair for longer distances or uneven terrain. This turns ordinary travel or workplace navigation into a logistical challenge, especially because of environmental inaccessibility. Rough roads, stairs, large campuses, and public spaces not designed for wheelchair users really compound my physical limitations.

Q: You also noted relying on a caregiver for "transfers" and if you fall. Can you expand on why that support is so critical? 

Dr. Raghav: Standing up from a chair or bed—that's the "transfer" part—requires significant effort and my muscles just can't generate the leverage needed anymore. The scariest part, honestly, is falling. If I slip or lose my balance, I cannot get up off the floor on my own. I completely rely on having someone nearby to lift me, which means I always have to plan my movements around someone else's availability.

Q: How does the weakness in your hands, shoulders, and neck affect other Activities of Daily Living (ADLs)? Dr. Raghav: It creates a real dependence when it comes to personal care. The reduced arm and shoulder strength makes dressing independently difficult, which is why I require caregiver support just to get ready for the day.

Q: How does this constant reliance on a caregiver affect your broader lifestyle and your career? Dr. Raghav: It completely limits my spontaneity and my ability to travel, work, or participate in social and professional activities without pre-arranged support. Balancing a demanding career as a Clinical Psychologist, advocate, and NGO founder with a progressive condition means that inaccessible environments and limited assistive technology directly constrain my ability to work and advocate at the scale I want to.

GNE Myopathy is a rare, inherited neuromuscular disorder caused by mutations in the GNE gene, which plays a role in producing sialic acid — a molecule important for healthy muscle function. The condition typically progresses as follows:

• Onset: Symptoms usually begin in early adulthood (commonly the late teens to 20s or 30s), often starting with weakness in the muscles below the knee, causing foot drop and difficulty walking.

• Progressive Muscle Weakness: Unlike many other muscular dystrophies, GNE Myopathy characteristically spares the quadriceps (thigh muscles) in its early stages, but weakness gradually spreads to affect the hips, shoulders, hands, and neck over time.

• Impact on Mobility: As the disease progresses, walking becomes increasingly difficult, and many individuals require mobility aids such as canes, walkers, or wheelchairs, particularly for longer distances or uneven terrain.

• Impact on Upper Body Function: Weakness in the hands, shoulders, and neck muscles affects fine motor tasks, dressing, transfers, and other Activities of Daily Living, increasing reliance on caregivers over time.

• Rare Disease Status: GNE Myopathy is classified as a rare disease, meaning awareness among healthcare providers is often limited, diagnosis can be delayed, and specialized rehabilitation or assistive technology support can be difficult to access.

• No Cure, Ongoing Management: There is currently no cure for GNE Myopathy; management focuses on maintaining mobility and independence for as long as possible through physiotherapy, assistive devices, environmental adaptations, and caregiver support.

Q: Hi Kabir, thanks for sharing. You mentioned being sensitive to bright lights and noises, and finding changes hard. What environments do you struggle with the most, and can you explain what it feels like in those moments?

Kabir: Places like classrooms, malls, public transport, and workplaces are full of bright lighting, loud noises, and crowds. That sensory overload can be physically and emotionally overwhelming for me, which is what sometimes leads to shutdowns or meltdowns—where my brain basically gets so overloaded that I just freeze up and can't speak or process anything. Also, sudden changes in my schedule or social plans cause me a huge amount of anxiety compared to my non-autistic peers, because I really need that predictability.

Q: When you need extra time to reply to someone, or prefer writing things down, how do people usually react?

Kabir: People often misunderstand it. I might just need extra time to process spoken language, or I might use text because I'm in a high-stress moment. But teachers, classmates, or employers often mistake that for me being rude or disengaged.

Q: Do you feel like people in general understand autism, or do you run into a lot of stereotypes?

Kabir: Autism is really misunderstood in India. Things I do naturally—like stimming, making limited eye contact, or taking things literally—are sometimes mistaken for disinterest, being defiant, or even a lack of intelligence. So I often get excluded rather than getting the support I need.

Q: You mentioned that social situations without clear rules are difficult. Can you say a bit more about that?

Kabir: Yes. Unstructured social situations, like group work, parties, or informal networking, are much harder for me to read and participate in. I genuinely want to connect with people, but struggling to navigate those situations often leaves me socially isolated.

Q: Since you're applying for college and jobs, what's the hardest part about making that transition into adulthood?

Kabir: Honestly, there is very little structured support out there. Learning to live independently and everything that comes with that, understanding what accommodations I could ask for in the workplace, and learning how to advocate for my needs without a system to help guide me... it's a real challenge!

Autism Spectrum Disorder is a developmental condition that affects how a person communicates, interacts socially, and experiences the world, particularly sensory input. Key aspects include:

• Spectrum Nature: ASD is called a “spectrum” because it presents very differently across individuals — some autistic people need significant daily support, while others, like Kabir, live largely independently but still face specific, real barriers.

• Sensory Processing: Many autistic individuals experience sensory input — sound, light, touch, smell — more intensely (hypersensitivity) or less intensely (hyposensitivity) than neurotypical people, which shapes how comfortable or overwhelming different environments feel.

• Social Communication: Autistic people often communicate and socialize differently rather than “less” — this can include needing more explicit communication, preferring routine social scripts, or finding small talk and unwritten social rules difficult to intuit.

• Need for Routine: Predictable routines help manage anxiety and cognitive load; unexpected changes can require significant extra effort to process and adapt to.

• Co-occurring Conditions: Autism often co-occurs with anxiety, ADHD, or sensory processing differences, which can compound the challenges faced in daily life, education, and employment.

• Lifelong Condition: Autism is a lifelong neurodevelopmental difference, not something to be “cured” — the goal of support and accommodation is to reduce unnecessary barriers, not to change who the person is.

Q: Hi Vikram! You mentioned that lectures and coursework are challenging. What makes them so hard to follow day-to-day?

Vikram: Fast-paced lectures, especially ones with limited visual aids, are really difficult to follow through lip reading alone. And note-taking becomes nearly impossible when I also have to keep my eyes glued to the speaker to understand what's being said. Plus, psychology has extensive technical vocabulary—like diagnostic terms and theoretical concepts—which standard captioning or interpretation services aren't always equipped to handle accurately.

Q: What about group discussions? Is it easier when you're just talking with other students instead of listening to a professor?

Vikram: Actually, group discussions can be harder. Psychology coursework involves a lot of case-based learning and seminars. When you have multiple people talking, interrupting each other, or speaking off to the side, it makes it very difficult for me to track who is saying what in real time.

Q: Does it get easier outside of class, like when you're just hanging out or talking to admin staff?

Vikram: Not really. Everyday academic interactions—like going to office hours, having informal conversations with classmates, or doing phone-based administrative tasks—often lack accessible alternatives. I usually have to repeatedly explain my needs, or I just go without full participation.

Q: You talked about doing clinical training and needing to pick up on 'tonal cues.' How does that work when you're deaf?

Vikram: That is one of my biggest barriers right now. As I progress toward supervised clinical practice—like observing therapy sessions, roleplaying client interactions, or eventually conducting my own client work—the field relies heavily on verbal, tonal, and auditory cues. It raises major open questions about how I'll actually access this training and later practice professionally.

Q: Are there a lot of other deaf psychologists out there who have figured this out and can mentor you?

Vikram: Unfortunately, there are very few visible examples of deaf professionals succeeding in psychology or similar client-facing fields here in India. That lack of representation makes it much harder for me to know what accommodations exist, or how my career path might realistically unfold.

Deafness refers to a partial or total inability to hear, and it affects individuals in widely varying ways depending on the degree of hearing loss, age of onset, and communication methods used. Key aspects include:

• Diversity of Communication Methods: Deaf individuals communicate in different ways — some use sign language (like Indian Sign Language, ISL) as a primary language, some rely on lip reading and spoken language, and many use a combination depending on context.

• Lip Reading Limitations: Lip reading is never fully reliable — many sounds look identical on the lips, accents and speaking speed vary widely, and lip reading alone typically captures only a fraction of spoken content.

• Group Settings Are Hardest: One-on-one conversations are far easier to follow than group settings, where multiple speakers, overlapping speech, and quick exchanges make it difficult to track a conversation in real time.

• Assistive Technology: Tools like real-time captioning, ISL interpretation, hearing aids, and cochlear implants (where applicable) can support communication, but no single tool fully replaces accessible communication design in a given environment.

• Educational and Professional Barriers: Deaf students in specialized fields often face a lack of established accommodation pathways, particularly in disciplines involving direct client or patient interaction, where the field itself hasn't traditionally been designed with deaf practitioners in mind.

• Not an Intellectual Barrier: Deafness affects access to auditory information and communication — it does not affect intelligence, capability, or potential; the barriers deaf students face are largely environmental and systemic, not personal.