Dr. Neena Nizar

@neena-nizar | contributor
Neena Nizar is an English professor who lives in Elkhorn, Nebraska. She is happily married to Adam Timm and has two boys — Arshaan Adam, 11, and Jahan Adam, 9. Arshaan and Jahan both have Jansen’s metaphyseal chondrodysplasia (JMC), a rare skeletal dysplasia they inherited from Neena. JMC affects less than 30 people worldwide.
Dr. Neena Nizar

Reflecting on the 30th Anniversary of the ADA: What We Still Need

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 I 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.” We cannot escape the patronizing labels; we are either objects to pity or heroes who 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 or 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 in learning to love our differences, and 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 who has the fun dance moves’, Jahan who has a great imagination’, or ‘Arshaan who is an awesome artist,’ that’s when disability will become an ordinary part of life. That’s when disabled people 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 so — 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, I believe we will have achieved a truly inclusive society.

Dr. Neena Nizar

Reflecting on the 30th Anniversary of the ADA: What We Still Need

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 I 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.” We cannot escape the patronizing labels; we are either objects to pity or heroes who 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 or 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 in learning to love our differences, and 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 who has the fun dance moves’, Jahan who has a great imagination’, or ‘Arshaan who is an awesome artist,’ that’s when disability will become an ordinary part of life. That’s when disabled people 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 so — 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, I believe we will have achieved a truly inclusive society.

Dr. Neena Nizar

5 Things to Know About Jansen’s Metaphyseal Chondrodysplasia

Jansen’s metaphyseal chondrodysplasia (JMC) is an ultra-rare skeletal disease that affects less than 30 people worldwide. It is an autosomal dominant skeletal dysplasia, meaning only one parent has to carry the gene for their child to inherit it. Interestingly, I never got a diagnosis until my second son, Jahan, was born. JMC causes symptoms such as: Short-limbed short stature Waddling gait Bowed legs Contracture deformities of the joints, caused by the shortening or hardening of tissue Small hands with clubbed fingers Clinodactyly (fingers that curve toward the palm) A prominent upper face and small jaw Chronic parathyroid hormone-independent hypercalcemia, which causes high blood levels of calcium Hypercalciuria, excess calcium in urine Mild hypophosphatemia, low levels of phosphate in the blood In short, JMC affects our daily lives in ways we are still discovering. With not much research out there, I had to really hustle to create a collaborative network of patients and researchers to make the dream of treatment a reality. In 2017, I set up the Jansen’s Foundation to raise awareness for JMC and find better treatments for this debilitating condition. And our efforts are paying off! The foundation is looking at our first-ever clinical trial for Jansen’s disease in 2020. Being a rare disease patient and a mom to two boys who inherited my “bad” genes has been an incredibly challenging road. But I am grateful for the many profound moments of joy and tenderness my boys share with each other. For those interested in learning more about JMC, here are five things you should know. 1. JMC is usually diagnosed during childhood. The condition is diagnosed based on a combination of radiographic and biochemical abnormalities. However, some patients are not diagnosed until adulthood. 2. JMC is the result of a genetic mutation. JMC is caused by a mutation in a gene that encodes for a specific protein (i.e., PTH/PTHrP receptor). This affects your parathyroid hormone which helps regulate the levels of calcium in your blood. 3. Most cases of JMC occur randomly. Most JMC cases are the result of a spontaneous genetic mutation. Inheritance is autosomal dominant, meaning only one parent has to have the gene for you to get it. Currently, there are about 30 patients worldwide with JMC. 4. JMC causes a variety of symptoms. The main symptoms I experience are bending bones, poor mineralization, and metabolic imbalances. Other symptoms include diminished muscle mass and gradual swelling of certain joints, low coordination and sometimes blindness and/or deafness. 5. There are currently no treatments for JMC. There are no known treatments for JMC, however, with the help of the Jansen’s Foundation, researchers at Harvard Medical School have created a peptide to normalize the activity of the abnormal PTH/PTHrP receptor protein present in Jansen patients. This treatment will be tested in humans soon. The ability to test this treatment gives hope to the power of precision medicine and the future of drug development pathways for rare diseases.

Dr. Neena Nizar

Advocating for Accommodations and Asking for Help With a Disability

Transitions are hard. Especially when you have a rare disease. My older boy started sixth grade this year. We were already reeling from the hormonal changes that come with pre-teen-hood, and braced ourselves for a middle school that had never had a student in a power wheelchair zip down their halls for the last 10 years. The pressure was on. I made calls, sent emails, drove up to the school every chance I got, and did everything parentally possible to ensure his accommodations were in place, and he, like his peers, would have a chance at a wonderful middle school experience. Finally, I was beginning to see some headway when I was suddenly affronted by a comment: “You know the real world doesn’t work like that!” The person who spoke had been watching me struggle with my kid as he transitioned into his new environment. “Excuse me?” I replied, my squinting eyes trying to take in the blows of her fierce words. “All these accommodations your son is asking for…” and she waved her hand in a perfunctory manner. “What is he going to do in the real world when no one is there to make those accommodations?” The color slowly left my face; it suddenly felt cold. The lady continued, “Don’t take this wrong way honey, but you are setting that sweet boy up for disappointment!” A million buried battles flitted across the pages of my mind – battles where a little boy stumbled and fell, felt the urge to turn and run, but did not; battles where a mother bellowed “this is unacceptable” over and over again till her throat was coarse and dry, and battles where defeat reared its ugly head, but was cut down by a little boy time and time again. Was I doing it all wrong? Were these mighty battles setting my son up to somehow fail? Trembling, I dropped my folder spilling the contents of my boy’s medical needs. Needs that neatly outlined adaptive PE, bathroom assistance after arduous hours of surgery and painful recovery, and tear drops – now dried over time – of an unspoken prayer that someone somewhere, between all the duties to be checked off, would find the compassion in their heart to make a little boy feel like he was just right for this world. I have always advocated for my sons, and now that my older boy was mature enough, I had started to encourage him to speak up for himself, to recognize his strengths and challenges, and to help him identify and push for the resources he needed. Now I wondered if speaking up and asking for what he needed was somehow enabling behaviors that would be frowned upon in the real world – a world where many buildings and entrances are still not wheelchair accessible, where workplaces still prefer hiring able-bodied employees, and restaurants that still fail to recognize the importance of plastic straws for people with disabilities. While it is true that the world may not be an easy place for someone with a rare disease, and the words of the woman holds true, the fact is there is so much more to the simple idea of “asking for an accommodation.” The Americans with Disabilities Act (ADA) which became law in 1990 strives to make sure that people with disabilities have the same rights and opportunities as everyone else. Title II of the ADA applies specifically to educational institutions, requiring them to make educational opportunities, extracurricular activities, and facilities open and accessible to all students. Yet, laws alone cannot create justice for little kids facing unspeakable battles. Just people alone can bring justice in the corridors and behind closed classrooms where eyes can’t see. Asking to be accommodated and working together as a team to make allowances for a rare disease or disability is an important step to justice and a skill kids need to learn early on. These kids need a support structure – to ask for the help of a community of others. This reliance enriches strong relationships. It gives the helping community (family, friends or schools) a chance to bond as a team, to grow, to transition, and to have new experiences, together. When accommodation is done right, and not begrudgingly, it can offer wonderful opportunities for discovery. Like when my boy climbed his first rock wall or shot a near bullseye in outdoor education using a modified archery bow! For a lot of us with a rare disease, asking for help is a remarkably difficult thing to do, an inconvenience for others, a sense of turning the spotlight on your weaknesses when all you want to do is blend in. Most often, a fear of asking for help is really a fear of judgment. That slight twinge of, “What will the other person think of me if I need help?” Learning to be unashamed about asking for help will be a strength that serves my boy well as he continues to navigate his complex and oft-unjust surroundings. And along the way, if his reaching out builds our sense of compassion, then we will have won a worthwhile battle. So to the lady who jolted me in my tracks, this world could do with more compassion and less wisdom that propagates unjust systems that marginalize the most vulnerable among us. I will continue to sow the seeds of self-advocacy in my son; I will enable him to understand his strengths and weaknesses, to know what he needs to succeed, and to make sure he communicates that to the people he meets.

Community Voices
Community Voices
Community Voices
Community Voices
Community Voices
Dr. Neena Nizar

Raising a Child With a Rare Disease and Answering Difficult Questions

Most everyone dreads difficult, challenging conversations. This includes conversations in which we have to deliver unpleasant news, discuss a delicate subject, or talk about something that needs to change or has gone wrong. Most often fear holds us back from having these conversations because outcomes are often unknown or uncomfortable. I have had conversations where facts are clear – it’s either black or white – and arriving at a solution and weathering the storm comes right out of a management training manual. But not all tough conversations lead to easy answers or neatly packaged solutions. This is especially true when dealing with rare disease. A few years ago, I was driving home after a long and rough physical therapy session for my boys. My older son, Arshaan, 9 at the time, was having a particularly hard time with his body. The pain was off the charts and was savagely shooting down his legs leaving him writhing agonizingly in the backseat. I gripped the steering wheel tightly and prayed the medications would kick in and give him some relief. We were about 20 minutes from home, but traffic was crawling. It was winter and the skies filled with ominous dark clouds. I steadied myself and turned up the radio in a desperate attempt to drown out our reality. At 9 years old, my son knew more about Jansen’s metaphyseal chondrodysplasia than I ever did growing up. He understood the mechanism of the disease, the gene responsible for it, and the grim fact that Jansen’s was an autosomal dominant condition which meant his mom had a 50 percent chance of passing down the gene to him and his brother. My boy could even rattle off its long and complicated name better than most doctors could! But in all his nine precocious years, he has never once asked, “Why me?” Why did he and his bother win the genetic lottery, inherit his mom’s rare disease, and get a debilitating and progressive skeletal condition affecting less than 30 people worldwide? An unforgiving disease that stripped him off a football-and-gym class type childhood and forced him to forever say “I’m OK” with tears in his eyes. But today the gates burst open. “Why me?” he asked ever so softly. I panicked. I was not prepared to answer. A tightness gripped my chest, and I felt myself gasping for breath. “Why me?” He persisted. Suddenly, the radio, as if privy to our conversation, crackled and spoke of a disciple asking why God had created a blind man. As if on cue, I could see Arshaan light up in the backseat, his eyes catching mine in the rearview mirror. He listened with rapt attention. I did too. “Neither this man nor his parents sinned. God has endowed the blind man to see the world in ways others cannot. And through his life and efforts, God’s work will be displayed in him.” I caught Arshaan’s acknowledgement in the mirror. He smiled to himself and then to me. It was a moment my little boy was unknowingly searching for but couldn’t quite articulate. It was a moment I had knowingly been searching for but dreaded its arrival. And in that amber of a moment, a heaviness lifted for both of us. The great big burden of gene-guilt so heavy and overwhelming turned into a comforting understanding of life’s profound and powerful ways. I smiled too. Right then, a calm washed over my little fellow and he fell asleep. To this day, I can’t be sure if it was the medicine or the moment that brought him peace. Either way, I was thankful. As both boys tackle their rare disease in a myriad of different ways – some that bring frustration and others that bring triumph, I have come to realize that not all questions have easy answers. In every household on the planet, in every generation, in every era throughout history, people’s lives have been a mixture of joys and sorrows, successes and disappointments. “Why me?” is in fact a very common question to ask. Why you? Why us for that matter? Why anything? Because this moment simply is. Have you ever seen bugs trapped in amber? Well, here we are, in some form of the other, trapped in the amber of the moment. For some, faith and religion may offer a source of comfort, for others it may be logic and pragmatism. Whatever your path, have those tough conversations with your child as they navigate their rare world. I have learned that being fully present and authentic during difficult discussions, allows you and your child to explore their need to understand, suspend judgment of how bad things are or could be, and focus on finding comfort in times when “why me?” becomes an aching refrain. As we go down unknown paths, I have become more prepared. Writing down three good things in my life at the hardest “why me?” moments helps redirect my boys to focus on things that crack a smile. It may not undo the injustice they feel and make things entirely right again, but it does take the edge off the burn just enough for a fell sweep of “I love you” to reaffirm their worth and steady their ship once more. It is not by sidestepping or fleeing from suffering that we find answers, but rather by our capacity for accepting it, maturing through it and finding meaning even when it is most obscure. To the parents who carry the guilt of passing down a dreaded gene, treat yourselves with gentle, soothing care. Wrap yourselves in a cloak of self-compassion and then step to help your child deal with what they feel. Learning that you can’t control everything that happens to you, and that it can be destructive to try, can be incredibly liberating for you and your child as you make sense of your rare world, together. The role of a rare disease parent is often a tiring one, and being optimistic and resilient even at your amber moments will help you sail that ship through even the most difficult conversations with your child.