Key Takeaways for the FDA from the Rare Disease Innovation Hub Meeting

The recent public meeting convened by the FDA’s Rare Disease Innovation Hub marked a significant milestone in addressing the unique challenges of rare disease drug development. The establishment of this Innovation Hub is a testament to the relentless advocacy from the patient community and organizations like Every Life Foundation. The meeting brought together a diverse group of stakeholders, including patients, advocates, industry representatives, and healthcare professionals, all united by a common goal: to improve the landscape for rare disease therapies. As the FDA reflects on these discussions, several key takeaways emerge that could shape future policies and initiatives.

Strengthening Collaborative Frameworks

A prominent theme from the meeting was the urgent need for enhanced collaboration among various stakeholders, including the FDA, NIH, academia, and patient advocacy organizations. Participants emphasized the importance of a streamlined process that facilitates partnerships, especially in funding and research initiatives. For instance, the potential for joint efforts between the FDA and NIH to support single patient INDs was highlighted. Robust collaborative frameworks will create an environment conducive to innovation, ultimately better addressing patient needs.

Simplifying the Regulatory Pathway

Participants expressed a strong desire for a more flexible and transparent regulatory framework tailored to the unique challenges of rare diseases. The FDA heard calls for clearer guidelines and reduced redundancy in data collection, particularly regarding natural history studies. Advocates also highlighted the ethical concerns surrounding the use of placebos in pediatric clinical trials, stressing the urgency of providing treatment to vulnerable populations.  By simplifying the regulatory pathway and recognizing existing data, the FDA can alleviate burdens on patients and researchers, thus accelerating the development of therapies.

Prioritizing Genetic Testing and Precision Medicine

The importance of genetic testing was a recurring theme, with many stakeholders advocating for the use of whole genome and exome sequencing as foundational tools for diagnosis and treatment planning. Prioritizing genetic testing and integrating genetic information into the regulatory process will enhance the development of precision therapies tailored to the unique genetic profiles of rare disease patients.

Enhancing Patient Engagement

A significant emphasis was placed on the necessity of structured and meaningful patient engagement throughout the drug development process. Stakeholders called for the FDA to adopt a two-way engagement strategy that actively solicits patient feedback. As we all know, the patient perspective is crucial, and patients asked to be recognized as integral partners in the drug development process. This mandatory engagement extends to early discussions around endpoints and clinical trial design, ensuring that patient priorities and experiences inform research.

Improving Communication and Transparency

The FDA received valuable feedback regarding the importance of transparent communication. Participants expressed a desire for clearer communication channels and more frequent and collaborative interactions among patients, sponsors, and the FDA. Stakeholders highlighted the need for transparency around both successes and failures in clinical trials to prevent others from repeating the same mistakes. By enhancing transparency and accessibility, the FDA can build stronger relationships with industry stakeholders and ensure everyone is aligned on regulatory expectations.

Addressing Mental Health and Holistic Care

Discussions underscored the mental health challenges faced by patients with rare diseases, emphasizing the importance of a holistic approach to care. The FDA can take this insight to heart by promoting initiatives that consider both physical and emotional well-being. Integrating mental health resources into treatment plans and ensuring clinical trials address the psychosocial aspects of living with a rare disease are essential steps forward.

Educating FDA Staff on Rare Diseases

Several commenters stressed the importance of FDA staff being educated about the specific diseases they review. This understanding will lead to more informed decision-making and a better grasp of the unique challenges faced by patients and researchers in the rare disease space. Investing in training for FDA reviewers can enhance the quality of reviews and ensure that policies are rooted in a deep understanding of the conditions at hand.

As always, there was a palpable sense of urgency in the discussions, but this time it was accompanied by hope. As the agency moves forward, these insights will be vital in shaping policies and initiatives that can significantly improve and save the lives of those affected by rare diseases. The moment for change is here!

Patient Advocates shared public comments at the FDA Innovation Hub meeting

The Intersection of Identity, Culture, and Rare Disease: What it means to be "seen"?

I recently had the pleasure of being a part of an incredible panel at the Global Genes Health Equity Forum at San Diego. The topic was an interesting one - The intersectionality of identity, culture, and the rare disease experience., expertly moderated by Michelle Rivas.

The intersectionality of identity, culture, and the rare disease experience. panel moderated by Michelle Rivas.

I have always identified as a person with a disability long before I was labelled with an ultra-rare disease. My earliest memory from my childhood is of my father carrying me up two flights of stairs so I could sit in a classroom with kids who were physically very different from me. I have advocated for access and inclusion to spaces I was never welcomed in long before I even knew how to advocate for a rare disease no one cared about. However, I soon realized that the two identities I carry with me intersect so much so that I am left wondering which of the two is marginalized at any given time.

The Inaccessibility Cycle

According to the National Collaborating Centre for Determinants of Health “marginalized” communities, peoples or populations are groups and communities that experience discrimination and exclusion (social, political and economic) because of unequal power relationships across economic, political, social and cultural dimensions.

This definition throws to light the several identities within the rare disease space that continue to be isolated and disenfranchised, and our panel bravely attempted to unravel some of these complex nuances. However, this is easier said than done as “diversity” “equity” and “inclusion” in rare diseases forces us to account for the various identities within it. Unlike many other social justice initiatives that strive to dismantle long-standing and well-documented historical vices, Rare Diseases is a national health crisis that continues to be invisible and poorly understood.

  What it means to be visible in Rare Disease?

1. The rare disease community is marginalized in getting effective treatments. For the close to 10 years now, I have been hearing the oft quoted stat “only have 5% of rare diseases have an approved FDA treatment.” Rare diseases continue to be invisible; every day we fight for treatments, chasing elusive rainbows and fading pots of gold. Being seen would simply mean more lives are saved. Being seen would mean this number increases every year. As Shundra Wooten, an attendee of the conference, painfully asked: “where’s the money? We are raising millions and yet there are no treatments.” If there is one identity that continues to be marginalized, it is the one with a rare disease.

2. Ultra-rare or nano-rare diseases are further invisible as an identity not worthy of resources, let alone life. "No one will care about 30 patients with Jansen's disease." The refrain still plays in my head reminding me of my standing in the cold totem pole of economic viability. Being seen means every life matters. Being seen means fighting for the rarest among us.

3. The rare and undiagnosed is an identity that hasn’t even made it to the starting line. Cue the infamous “diagnostic odyssey". Being seen would mean easier access to gene panels, microarrays, and exome sequencing to identify the molecular cause.

As many as 25 million Americans – about 1 in 13 people - suffer from a rare, undiagnosed condition.

4. Patient organization leaders - an identity that carries on its sagging shoulders, the hopes and dreams of an entire rare community. Endlessly searching for answers and learning the world of drug development, all while watching a loved one die is perhaps the loneliest feeling in the world. There is no worse identity to carry than that of one who has lost his world to a fatal diagnosis.  Being seen here means to listen, pause, and reflect. This stuff is so ridiculously hard. Offer allyship through collaboration and genuine support.

Patient Organization Leaders work tirelessly for treatments.

5. The Adoptee in Rare Disease. Daniel Price spoke powerfully of the trauma he carries with him as a Chinese Adoptee advocating for Tuberous Sclerosis Complex (TSC). To be seen is to honor the adoptee experience and support the entire family with tools to cope.

Daniel Price, advocating for TSC

6. The indigenous. Vanessa Hiratsuka gave voice to the everyday power struggle she faces as a marginalized researcher in the world of academia. To be seen is to honor rare disease community partners with their individual strengths. Honor them by Inviting them to participate in the research process either as members of review panels or community advisory boards.

The FDA now asks to include underrepresented populations in Clinical Trials, yet inclusion in rare disease is stymied, in most cases, by the lack of information on disease prevalence. Further, with most rare diseases lacking International Classification of Disease (ICD-10) codes, it is very difficult to track how many people have a particular disease, where they are, and all the characteristics of the disease.  Without these codes, we continue to be invisible, fighting never-ending battles in the dark with insurance to cover life-sustaining procedures and therapies. 

Rare disease is a global health crisis. To view it any other way is to marginalize 10,000 rare diseases (3.5% – 5.9% of the worldwide population). Inclusion in Rare Disease requires one to patiently and purposely lean in to understand the myriad of identities that intersect within this space.

Only then, can we truly be seen. 

Of Hope and Miracles

As I sit to write a reflection of a year like no other, my mind is a gang of feelings: weariness, hope, sadness, and resilience – all clamoring amid the cacophony of customary fireworks that light the night sky.

2021 has been a tragic year for so many. The threat of an unseen “enemy” continued to dramatically change life for individuals, families, and communities. Grief wreaked havoc indiscriminately and without mercy. The loss of normalcy, the fear of economic toll, the loss of connection hit all of us and we continue to grieve the collective loss of the world we know.

Any hope of a return to life pre-pandemic in 2022 has already been thwarted by the emergence of new Covid-19 variants.

When you are faced with a diagnosis of a rare disease, you often go through a grieving process. This non-linear path is accentuated with powerful moments of sadness: “I don’t know when this will end. After journeying wearily along the rare path, the stoic acceptance sets in: “This is happening; I have to figure it out.”

This year, we seem to have heroically carved “A Brave New World”, almost Huxley-like, and proceeded “to accept” it in the best way possible. In this dystopian landscape, “Zoom” became a verb, masks covered smiles, and we celebrated precious moments of life and death via technology.  Acceptance, after all, is where the power lies. There is control in acceptance. I can wash my hands. I can keep a safe distance. I can learn how to work virtually.

"If one's different, one's bound to be lonely."

"If One’s Different, One's Bound to be Lonely."

Aldous Huxley’s Bernard Marx and John the Savage both come to the realization that being different isn't easy. Bernard is a little bit short to be seen as an Alpha male, and John is denied being a part of the Native American reservation because of his difference in appearance. With both John and Bernard’s outsider portrayals, Brave New World clearly reveals that “if one’s different, one’s bound to be lonely.”

The ongoing harms of the pandemic have been especially evident for people with rare disease and disabilities. Disruptions in education, employment, health care, and social services have been amplified. Parents took on full-time caregiving roles, while also stepping into new roles as special educators, speech therapists, behavior therapists, and more. This has been exhausting, frustrating, and often heart-breaking for families. 2021 has been another lonely year for rare and those with disability.

Power of Advocacy

In times of crisis, weaknesses in our institutions and social systems, and marked health and economic disparities, become even more evident. Friends with disabilities feared that they would be denied access to ventilators and lifesaving treatments due to medical rationing. Triage policies were driven by biased attitudes toward individuals with disabilities, or those that failed to explicitly protect against disability discrimination. The disability community strongly responded to these short-sighted policies and advocacy ensured equal, nondiscriminatory access to lifesaving care. 2021 has been another exhaustive year of fighting for rights.

Lessons from Covid

In 2021, Timothy Syndrome Alliance, UK, released a powerful video on Rare Disease Day to drive home the need for treatments for Rare Diseases. Rare Strikes Back used clever puppetry to juxtapose the world’s rapid response to Covid and the more singular rare disease like Timothy Syndrome that is still in search of a cure.

The video was a clarion call of sorts, and resonated with many suffering from rare diseases. Knowing that cures are possible… only if the pain and suffering touches more people is a bitter truth to reckon with.

Earlier this year at a National Institute of Health virtual event, Dr. Christopher Austin, the former director of NIH’s National Center for Advancing Translational Sciences, vocalized a similar message: “It’s time to change the narrative: rare disease is a public health issue because while individually, these diseases are rare, collectively, they are common,” He went on to say what many of in the rare community have felt watching Covid vaccines emerge like miracles: “The lives of rare disease patients are every bit as important as the lives of Covid patients. If we move heaven and earth to diagnose and treat Covid patients, we need to do this for rare disease patients, too.”

The Need for Collective Urgency

This past year we have seen even more clearly the futility of trying to change the world without the collective efforts of everybody involved. You can’t curtail a virus if the community you are a part of won’t do its part to actively protect or care for those vulnerable among us.

True to Carol Hanisch’s “Personal problems are political problems. There are no personal solutions at this time. There is only collective action for a collective solution.”

Accelerating treatments for rare diseases requires collective urgency. Rare needs a Covid response: quality communication between patients, researchers, and medical professionals; open access to digital information; and decentralized clinical trial and studies.

But above all this, we need more people to care about rare. Covid will eventually lose out because the world has collectively decided to find a treatment.  In less than a year of Covid becoming a household boogeyman, we were hearing possible treatment options. In stark contrast, it takes roughly 20 years to find a treatment for a rare disease.

Zacky excitedly opening up his Christmas present

Hope in a Hard Year

Hope may seem like a hard feeling to maintain in a year like this one, but there is a resilience among rare communities that allows us to focus on small every day breakthroughs as big miracles.

Even though we continue to anxiously wait to get to our clinical trial at the NIH, we have much to be thankful for. Our Boston research team, led by Dr. Jueppener, Dr. Thomas Gardella, and the NCATS team at the NIH are finishing up the toxicology studies that the FDA require. A mouse model created with my Jansen’s gene is alive (not sure how to feel about that!). And we are set to fly to the NIH early in 2022 to get baseline data for the First In-Human protocol for a Jansen’s disease treatment.

Two new little girls and a little boy with Jansen’s found and connected with us. A young adult lady also joined our Jansen’s community taking our total number of genetically confirmed cases worldwide up to 14. We are always sad to hear of a new diagnosis, but are comforted by the knowledge of our work towards treatments that will forever change their prognosis.

For Christmas, Zacky’s mom shared a joyous picture of her little boy excitedly opening his present. Zacky has autism as well as Jansen’s. This moment was particularly moving for the family as there is plenty of evidence by the bright smile that Zacky finally understands the holiday and the power of giving and receiving gifts.

Miracles and a New Tomorrow

My friend, Matt Lafleur, lives with Friedrich’s Ataxia (FA). He recently penned a beautiful piece on Becoming the Miracle We Seek that I read over and over again. Matt speaks eloquently about searching most of his life for a miracle cure for FA. After an exhaustive and disappointing physical and spiritual quest, he concludes: “Instead of becoming hopeless and nihilistic, or praying that one will be given to us, our duty is to create our own miracles.”

History has taught us that by banding together, miracles are possible. The history of the Americans with Disabilities Act did not begin on July 26, 1990 at the signing ceremony at the White House. It did not begin in 1988 when the first ADA was introduced in Congress. The ADA story began a long time ago in cities and towns throughout the United States when people with disabilities began to challenge societal barriers that excluded them from their communities, and when parents of children with disabilities began to fight against the exclusion and segregation of their children.

As Matt unknowingly suggests, perhaps a watershed moment is upon us. The pandemic has given rise to the need for a collective miracle – a Rare Disease Institute at the National Institute of Health - to accelerate treatments and cures for more than 300 million people living with rare diseases.

As Alfred Lord Tennyson puts it in his play The Foresters, “Hope smiles from the threshold of the year to come, whispering: ‘It will be happier.’”

Rare Disease - The Waiting Game

For much of my adult life, I didn’t understand much about ‘Waiting for Godot’. I first encountered Samuel Beckett’s play when I was in college, many years ago, and read it grudgingly both in French and later in English. At the time, the story of Vladamir and Estragon, two men waiting for a third, who never appears, seemed a maddening slog through the existential questions of life. After reading it, I felt, if anything, frustrated; the play prompts many questions, and answers none of them.

As the title suggests, it is a play about waiting. ‘And if he comes?’ one of Beckett’s tramps asks the other near the end of the play. ‘We’ll be saved’, the other replies, although the nature of that salvation, along with so much else, remains undefined: for both characters and audience.

Waiting for Godot by Samuel Beckett, 1952

Many years later, when my boys and I received a diagnosis of Jansen’s Metaphyseal Chondrodysplasia, a rare and debilitating skeletal disease, I embarked on a seemingly impossible quest for a treatment. I quickly learned that on average, it takes at least ten years for a new medicine to complete the journey from initial discovery to the marketplace, with clinical trials alone taking six to seven years on average. The average cost to research and develop each successful drug is estimated to be $2.6 billion dollars.

I spent hours poring over research, setting up a nonprofit to spearhead drug development, and caring for my boys during endless hospital stays. During this new phase of my life, my mind often wandered back to Beckett’s play and its existential themes of endless waiting.

When you are faced with a rare disease diagnosis, your first thought is someone somewhere will do something to save the situation. Like Vladamir and Estragon, you wait for some kind of salvation from your hurt, and before long, you realize no one’s coming. You realize the person you were waiting for was yourself.

So you spring into action. You learn the science, master the ins and outs of a broken healthcare system, fundraise, write grants, and talk with those who will listen. And you learn to wait even though time is your bitter enemy.

But waiting is hard. We wait in grocery lines, in traffic, in the dentist's office. We twiddle our thumbs, stifle our yawns, and fret inwardly in frustration.

In the rare disease world, the waiting game is even harder. We wait for a diagnosis that often doesn't come, for insurance approvals that feel like small miracles, for a tiny movement that defies all odds, or for a doctor to finally listen to a mama’s heart. We wait for a child we hold in our arms to pass quietly away for the alternate would be too painful to bear. We wait for prayers to be answered. We wait for hope to be restored.

Image by www.Findacure.org.uk

I used to view waiting as mere passivity. When I looked it up in the dictionary however, I found that the words ‘passive’ and ‘passion’ come from the same Latin root, ‘Pati’, which means "to endure." Waiting is thus both passive and passionate. It's a vibrant, contemplative work. It means descending into self, into the deeper labyrinths of prayer. In the world of rare, it involves listening to unheard voices within, facing the wounded holes in the soul that come from unspeakable trials, the plastered smiles that hide unimaginable pain, and all the places one lives falsely. It means struggling with the vision of things as they could have been and molding the courage to live with things as they are.

Like J. B. Priestly, I too have always been delighted at the prospect of a new day, a fresh try, one more start, with perhaps a bit of magic waiting somewhere behind the morning. And while 2020 dealt the world the unkindest cut of all with a raging pandemic, the dawn of a new year delights us with the magic of a vaccine that promises to make everything right once more.

The break-neck speed with which this vaccine hit the market is not lost on the rare disease warriors who continue to fight all hours of the day while they await a word, an answer, a reason to go on.

Momento mori is not the end of what Beckett’s play gives us. Like this year, the play points to more than just the despair and hopelessness that we know and feel in our bones; there’s also an endurance we recognize. At the end of the play, Estragon says, “I can’t go on like this,” and Vladimir responds, “That’s what you think.” What Beckett meant, writing just after the end of World War II – and what every rare patient means when they utter these words - is that we’ll go on because that’s what we humans do. It’s not beautiful or hopeful, necessarily. It just is.

On the brink of 2021, my hope is that the spirit of human endurance strengthens the resolve of 7000 rare disease warriors, lingering on the roadside, waiting for Godot. Waiting for cures.

Leadership and Disability

Right after my Master’s degree, I decided to venture off and carve my own path. It was the first time I was out of the protective reach of my family and friends. I was spurred by the desire to prove to everyone – including myself - I could thrive on my own despite (or in spite) of my disability.

I received several interview calls. I had, after all, a glowing resume filled with meritorious accolades and achievements.  However, after being turned down for jobs I looked highly qualified for “on paper”, it began to dawn on me that my physical appearance may have tipped the decision against my selection. I decided to wear long flowing jackets that covered the bony projections around my wrists, and donned longer skirts to hide my misshapen legs. But my naivety did not mask my short stature, jagged teeth or visible limp.

One employer confirmed my suspicions almost unceremoniously and spared me any further doubt. After travelling half way across town, he stopped me from even sitting down curtly positing: “If I knew you looked like this, I wouldn’t have asked you to come down!”

The words were stilling. Twenty years later with a Doctorate in Educational Leadership in my pocket and an enriching career in Higher Ed, those words still haunt me in the dark.

Today, I am woke to the profound change happening all around me. People with disabilities are raising their voices and demanding to be heard, recognized, and valued. Social media is flooded with voices from friends and emerging role models with disabilities who are no longer willing to accept their space at the fringes of power and decision-making. These voices are busting open the sanctums of healthcare, education and politics. The battle cry, “Nothing about us, without us,” rings loud; the cloak of oppression shed, we are emboldened to forge a brighter path.

However, the clarion call is yet to reach the quiet workspaces where people with disabilities still continue to hide away their disability or lean on a mentor or kind boss to help them navigate the higher ranks of leadership and authority.

Pic by Kathryn Gamble, New York Times

Inclusion Policies that Fail to Include

There are two reasons why inclusion policies fail to account for people with disabilities. For one, leadership fails to acknowledge that people with disabilities can do the work the organization needs done. Two, organizations fail to acknowledge that 3 in 10 white-collar professionals in the United States have a disability, and those in their organization that fall into this “largest minority” group, need support beyond those crisply outlined in compliance manuals enforced by the Americans with Disabilities Act (ADA).

Why Hire People with Disabilities

Besides the ‘moral compass’ premise: hire people with disabilities because it’s the right thing to do, hiring people with different experiences enriches perspectives and strengthens teams. People with disabilities have often encountered difficult environments when navigating a physical world not designed for them. Every day, I explore problem-solving strategies, develop new mental maps, find effective communication strategies, and repeatedly demonstrate resilience simply to do what those around me without a disability can easily do.

Professor Brene Brown says, “The courage to be vulnerable is not about winning or losing, it’s about the courage to show up when you can’t predict or control the outcome.” I have often found myself connecting to others through my own vulnerability. I find myself more open, compassionate, and willing to listen to my students and co-workers who struggle in dark places. Being able to confront your own weakness is critical to great leadership and those living with disabilities constantly face their own weaknesses and flaws in their environment. As Brown points out, this broader view creates within us a language of empathy which is a vital tool for empowerment of both individuals and organizations.

At Harvard Medical School - Guest Lecture, 2019

Disability and Leadership

My disability has made me more eager to be successful. In fresh roles and new environments, I have found myself constantly articulating my ability because most people either consciously or unconsciously assume that “disabled” is equivalent to “not able”.

After being overlooked for a senior leadership position, I was very kindly informed: “You need more leadership experience” even though I was the only one with a Doctorate in Leadership among the candidates and the interviewers!

Leaders with disabilities must explicitly articulate and repeatedly demonstrate the value that they add to an organization, on a team, or in a specific role more than abled leaders.

Friends with disabilities report never asking for help for fear of reinforcing stereotypes of people with disabilities as weak and needing support. This sheer resilience to get past setbacks and obstacles, and adaptability to engage in changing environments are ironically some of the highest qualities of effective leadership.

The Loudest Voices

In the attempt to have our voices heard, people with disabilities engage in a quest for social justice unbeknown to us. We constantly fight the urge to scream: “That is unfair” when yet another project is not credited to the one who toiled over it, and are left wondering whether it is right to voice a concern. To speak up. To cause a stir. To shake the neatly held belief that people with disabilities are more than “able”, and may actually excel in the work they do would be a travesty that could impact the chances of ascension in the ranks.  

We quietly champion the underdog in an unconscious desire to balm our own cuts.

People with disabilities walk a tight rope. We cannot be too assertive least we come off as “intimidating”. We cannot be too timid for fear of being seen as “weak”. Within the narrow confines of this able-bodied space, it is up to us to understand and demonstrate how we will create value.

ASBMR Conference 2018

Culture Change

For people with disabilities to succeed in the workplace, a culture must be in place that not only accepts their presence, but embraces it. Organizations breaking ground in disability inclusion are challenging the mindsets that impede hiring people with disabilities and supporting them in achieving their professional aspirations.

The same structures that are in place for other diverse groups should be adapted for people with disabilities. A commitment at the top to establishing an inclusion policy and adhering to leading benchmarks set by the Disability Equality Index (DEI) will set the tone for others in the organization to follow. Through inclusion training and structures of accountability, these policies will become second nature in an organization’s culture.

Understanding disability and leadership still needs more research. There is a deep well of knowledge that can be mined from the long history of the disability rights movement.  The tide is high for change to occur. The view of people with disabilities as “weak” or “feeble”, “intimidating” or “scary” is a chapter in a yellowing book that long since needed to be shred.

The image in its place is raw and real, powerful and capable of leading.

Reflections on 30 years of ADA

I’ve often dreamed of 24 hours of a disability-free life for my boys. Some days, I become greedier; I want a week! A month and maybe even a year! During this time, I’d watch them run in the backyard and kick a ball and climb a tree. The world would not be big enough to contain the two. I’d watch them ride a bike, break out in dance, and most certainly take a leap off a high bridge. I’d join them too! Play football and run across the beach just for the heck of it!

When people ask me what it’s like living with a disability, it’s difficult to answer. I’ve always lived with a disability, so never knew anything else, kind of like the pig in ‘Babe’ who never realized he was a pig until it was pointed out.

When Jahan, my 9 year old, asked why people stared at us when we went out together, I fumbled for an answer. However, Arshaan, my older son, who is more attuned to the ways of the world, spared me the painful moment of parenting a child with a disability by insightfully pointing out: “it’s because they are not small like us.”

I found it interesting my 12 year old framed his response to focus on them being different from us and not the other way – after all we were the ones with the rare bone disease that kept us quite visibly different from others.

People with disabilities have always been perceived as either: fit for institutions – “the best place for them” or not fit for society - “they wouldn’t survive in the real world.” Do what we can, we cannot escape the patronizing labels; we are either objects to pity or heroes that conquer adversity.  History may represent us as victims of fate and popular literature may demonize us - the villain with the limp or a scar. But the truth is, describing people we identify as "other", as not just different from us but actually ‘bad’, is perhaps the most common way of putting people outside the community and keeping them there.

The Americans with Disabilities Act (ADA), the civil rights legislation that was signed 30 years ago this month, on July 26, 1990, was transformative in providing accommodations for people with a range of disabilities.

But equality in theory does not mean equality in practice. Thirty years after the ADA’s passage, people with disabilities still reel from the historical inequities that have long pushed us to the margins of society. Children with disabilities are still less likely to graduate from high school and far less likely to attend college than their non-disabled peers. In every situation, they are “other-ed” and relegated to non-thinking, non-contributing, non-productive members of society.

When the boys go out to play, there is usually a kid at the playground that makes it his/her duty to point out how “different” they are. “Thank God, I’m not diseased like you!” “Why do you walk so funny?” or the most common refrain: “Why are you in a wheelchair?” And almost always, the boys tackle the callous confrontation with stoic valor.  

Luckily, the boys have parents and friends who remind them every day that being “different” isn’t all there is to who they are.

While we celebrate the ADA and its milestones, and talk about the work that still needs to be done, let us also talk about the responsibility we all have towards creating conversations around acceptance.

Teaching acceptance is the first step to learn to love our differences, understanding and appreciating what others bring to our lives.

We are all too familiar with ‘Johnny, the blind boy’, ‘Jahan, the short kid,’ or ‘Arshaan in the wheelchair’. When we begin to start thinking, ‘Johnny the one with the fun dance moves’, Jahan who has a great imagination’, or Arshaan who is an aspiring artist, that’s when disability will become an ordinary part of life. That's when people with disability will be counted in.

There will always be kids in the park who try to make sense of disability but lack the tools to adequately do so. It is the fear of one's own feelings, or lack of them, that prevents the effective teaching of disability and the processing emotions that go along with them.

The good news is, these kids at the playground do not stop my boys from venturing out. For they know there are always those who see past their wheelchair and bendy bones, coming up with accessible games that everyone can be a part of. And they didn’t need ADA to tell them how to do it. They just did.

People are complicated; there are ‘good’ ones and ‘not so good” ones. Sometimes there are even strange combinations of both.

If we can accept people with disabilities to be similar to people without disabilities in that they are simply PEOPLE first, we would have achieved a truly inclusive society.