Policy — Articles — Crohn's & Colitis Young Adults Network

Please provide your most recent job history. Done. Proceed to the next page. Do you have a disability that you would voluntarily like to disclose? This can include autism, blindness, cerebral palsy, missing limbs, autoimmune conditions like lupus, gastrointestinal diseases like Crohn’s disease or IBS…I blinked, and stopped. What did I just read?

In the past, I had always checked No, I don’t have a disability or history of disability. But now, as I start to look for Physician Assistant (PA) jobs, I can’t ignore the fact that I live with ulcerative colitis (UC) and flares can rear their ugly heads even when I take the best care of myself. I never had to sit and ponder this question before. Because of the way disabilities are viewed by most people, stigma swirls around it, leaving previously unaffected people like me unaware and uneducated about progress being made and the struggles still faced in the workplace. Disabilities are commonly viewed with negative connotations - several of my coworkers and other colleagues that live with chronic illness and/or disabilities have highlighted this and spoken powerfully against this negativity. Living with a disability doesn’t mean that you don’t have as much to offer. The people I’ve met through the chronic illness and disability community are some of the most resilient, creative leaders I know. We face our challenges and continue living and advocating against all that is physically or mentally against us - we have to draw incredible strength and grow up sooner and in ways that most others don’t.

However, I still struggled with multiple emotions as I sat, mulling my thoughts, stuck on this page of a job application. I have never considered myself as a person “who has a disability.” I felt guilty - would those with disabilities think that I don’t support them since I don’t want to group myself with them, giving myself another label that’s often viewed as weak? Am I misrepresenting those who do have disabilities because my UC has been so mild and I am largely functional? I felt that I don’t belong in the “disability group”, but I also can’t deny that I have a chronic illness that can be disabling in a variety of ways. I definitely consider myself lucky and blessed, but I know that my UC can change throughout my life and potentially become more difficult to control. I struggled to work through these thoughts, but then thought about how my growth this year from being more involved with advocacy has given me tools to advocate for myself and to continue learning from this community.

My options were:

Yes, I have a disability, or have a history/record of having a disability
No, I don’t have a disability, or a history/record of having a disability
I don’t wish to answer

What should I choose? It had to be either #1 or #3. I couldn’t lie - I was more afraid that it would not go over well if I did get the job and had to bring up my UC later to my employer. But then, if I marked “yes”, could that jeopardize the chances of me getting interviewed or getting a job? I’ve heard awful stories about those who hid their disability from their employer because they knew it would affect them being hired or even interviewed. Luckily, I was working with another healthcare provider who had been diagnosed with lupus over the past year and was also learning how to navigate her chronic illness in the work environment. I asked her what she thought and we ended up having a candid conversation - I realized that if marking “yes” caused me to not get an interview or a job, then that job wouldn’t have been supportive enough for me anyway. Perhaps this is my stubborn streak coming through, but I hope that working in the medical field will hopefully make potential employers more understanding. However, I know that the stigma that encircles chronic illness and disability still permeates the workplace, and this fact will stay on my mind throughout my job search.

In the end, I did mark “yes.” It is more important to me to have the chance to advocate for myself and be supported rather than hiding my diagnosis out of potential embarrassment or fear of how I would be treated because of it. Maybe this will backfire, but by being up front about my UC, I’ll feel more comfortable in my workplace. I hope that I’ll be supported enough to communicate any issues I’m having or if I do end up needing some sort of accommodation in the future. I’m very excited about applying for jobs and starting this new chapter in my life and career as a PA, but I still have much to learn about disability in the workplace. I hope by learning to navigate these waters, I can help others who may be in the same situation - questioning if they fall into the disability category or not, wondering how they should approach disclosing (or not disclosing) their condition to their employer. Since the US just hit the 30th anniversary of the Americans with Disabilities Act, I also plan to continue to educate myself and learn more about the disability community in conjunction with chronic illness. We should never have to choose between our career and our health, and I hope I can join many others who are working to make this a reality for all who are affected by chronic illness or disability.

On July 26, 2020, the United States celebrated the 30th anniversary of the Americans with Disabilities Act (ADA). I’ve known about the ADA for a few years now, and I think that it is a great thing! From an outsider’s perspective, what I admire the most about the ADA is its wide scope. The list of medical conditions that can be evaluated for disability benefits seems exhaustive and as inclusive as possible. Disability is very difficult to define in precise terms as it can be a very personal experience. Hence a policy like the ADA which has a wide scope of application should be adopted by every country that wishes to protect the interests of the disabled.

The Rights of Persons with Disabilities Act (RPwD Act) is the Indian equivalent of the ADA. The full text of the Act can be accessed at http://www.tezu.ernet.in/PwD/RPWD-ACT-2016.pdf. The RPwD Act is introduced to be “An Act to give effect to the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) and for matters connected therewith or incidental thereto.” The definition of a “person with disability” adopted by the Government of India is the same as mentioned in the Convention - “a person with long term physical, mental, intellectual or sensory impairment which, in interaction with barriers, hinders his full and effective participation in society equally with others.” India was one of the first countries to ratify the convention. We did it in 2007. But the RPwD Act came into force only in 2016, and it is yet to be implemented by all the states of India.

Leaving aside the poor implementation of the Act, the list of conditions that can qualify someone for disability benefits is very short and includes only 21 conditions, most of which are visible disabilities. People with these conditions are evaluated and given a disability certificate that mentions the extent of their disability as a percentage. This percentage determines the extent of support they can receive from the government. The RPwD Act lists all the rights and entitlements of a disabled person. It also lists various measures taken by the government to protect the interests of people with disabilities which include reservations for disabled persons in various areas like employment, education, land allotment, and developmental schemes.

Ever since I began graduate school, I’ve had to speak up on several occasions for receiving appropriate accommodations. In these discussions, to highlight the seriousness of my condition, I often bring up the fact that patients with Inflammatory Bowel Disease (IBD) who satisfy certain conditions, and patients with ostomies receive Disability Benefits in the United States. However, since the Government of India (GoI) does not recognize ostomy/IBD as conditions that qualify someone for disability benefits, the university is not obliged to provide me any support. A couple of my friends suffer from multiple chronic conditions but do not receive any disability benefits, because they’re not disabled legally.

The definition of a person with a disability as mentioned in the UNCRPD and adopted by the GoI is a dynamic one and hence, policies that are meant to benefit the disabled must be dynamic too. However, to my knowledge, there is no mechanism in place to extend the list of disabilities. Compared to the ADA, the RPwD has a very limited scope of application. Speaking as a young adult with IBD, most of us do not have insurance. We face difficulties in gaining and maintaining employment. The same is true for education. Our condition is treated as a taboo. Every aspect of our life is affected by our condition, and for those with ostomies, the problems get magnified. Is this not what a disability is defined to be? A person with a missing toe is 10% disabled according to the disability evaluation guidelines. A person with a missing colon is 0% disabled. Makes sense, right?

The GoI has recently published the draft of the National Policy for Rare Diseases 2020. The World Health Organisation (WHO) defines a rare disease as an often debilitating, lifelong disease, or disorder with a prevalence of 1 or less, per 1000 population. However different countries have different definitions. In the United States, a rare disease is one with a prevalence of less than 6.4 per 10000, and in Japan, the parameter is 1 per 10000. India on the other hand has no such parameter because of a lack of data which is due to a lack of proper health infrastructure that would enable such data collection. The draft mentions government support for the treatment of certain treatable conditions with an upper limit of INR 15 lakh or roughly 20000 USD. The government does not plan to provide any support to those with long-term conditions, citing a lack of resources, and recommends setting up digital platforms for donations. India spends less than 4% of GDP on healthcare. A lack of resources does not seem like a justifiable reason for refusing to support those with chronic and rare conditions when the fact is that India has one of the lowest expenditures on healthcare globally.

Coming back to the topic of disability - will people with rare, untreatable, lifelong conditions, receiving zero support from the government, be able to participate in society as effectively as others? Are they not disabled as per the definition adopted by the GoI? The fact is that the RPwD act is itself disabled. It does not do justice to the millions of people suffering from many conditions that impact the quality of life, social participation, and academic and professional outlook. The fact is that most patients struggle to fund their treatment because chronic and/or rare conditions often require expensive medications and with limited or no insurance coverage, the battle to survive and stay alive is the one that most are fighting. Education, employment, and social integration are not even in the picture.

The exceedingly slow pace of healthcare reforms and the lack of support for people with various chronic conditions that severely impact their lives makes me sad. I don’t know when the situation will improve. If in 2020, a country like India, which has ambitions of being a superpower says that it doesn’t have enough resources to support its citizens with rare chronic conditions and has a list of disabilities that includes only 21 conditions, what hope can I have? I also feel like the general population has never considered the problem of healthcare seriously. It has never been an issue during elections. So I guess, it’s us who are to be blamed. There’s a lack of unity among patient communities too. How do you rectify all these? Honestly speaking, I’m a naive person. The only thing that I can say is it shouldn’t be that difficult to come up with a system that ensures equal and unhindered access to opportunity for people, irrespective of their health condition. From my vantage point, I see a lack of motivation amongst our leaders, the healthy, and the abled population to work on issues related to the healthcare sector. I hope the situation improves in the future.

India celebrated 74 years of independence on 15th August, but young adults with chronic conditions like Inflammatory Bowel Disease are yet to be liberated from various shackles that bind them to the ground and hamper them from living a free, independent, and fulfilling life.

That’s all from my side this month. Sayonara!

References

Thoughts on IBD in the Workplace

The Invisible Rights of Persons with Invisible Disabilities Act of India