International Day of Persons with Disabilities

December 3rd is celebrated as the International Day of Persons with Disabilities (IDPD).

According to the World Health Organization:

• About 15% of the world’s population lives with some form of disability. That’s over 1 billion people!
• People with disability often don’t receive appropriate healthcare. This relates to important issues related to affordability, access, and (in some cases) being denied healthcare.
• People with disability are more likely to be unemployed than people without disability. Statistics from global data reveal an employment rate of 75% for individuals without disability as compared to 44% for those with disability.
• People with disability have the ability to live and participate in community and society. Unfortunately this ability, intention, and basic human need is thwarted by an appalling lack of services, assistance, support, and access.

As a genetic counselor, I have always believed in – and continue to strongly support – the now growing overall understanding that disability is an inherent part of the human condition. I believe “normal” is relative, subjective, and not set in stone. In my experiences with individuals and families with genetic conditions, disability, as well as “normal” individuals, I can assure you that regardless of someone’s physical or mental abilities, human beings remain human beings. Consequently, the rights of individuals with physical, intellectual, or social disability are human rights. 

Do you not find it strange (to say the least) that people with disabilities are often deprived of the right to independent living, many are locked away in institutions, or shackled in their very own homes? If you’re feeling “pity” right now, allow me to, with respect, inform you that folks with disability don’t need pity but rights. People with disability experience discrimination and human rights abuses as a result of cultural stigma, fear, misunderstanding, superstition, and an overall lack of community-based services that are critical to ensuring their rights, including under the UN Convention of the Rights of Persons with Disabilities. 

So what I’m going to list out today, are the rights of individuals with disability. This list is in accordance with the Declaration on the Rights of Disabled Persons; a declaration of the General Assembly of the United Nations, made on 9 December 1975. 1975 certainly seems like a long time ago, but here is me, reiterating some of these rights from 1975 in 2020:

• The right to respect for human dignity
• Right to the same civil and political right as “other” human beings
• Right to measures designed to enable self-reliance
• Right to medical, psychological and functional treatment as necessary
• Right to economic and social security, including the right to employment
• Right to have consideration of special needs at all stages of economic and social planning
• Right to live with their families or with foster parents and to participate in all social, creative or recreational activities
• Right to protection against exploitation, discrimination, and abuse
• Right to qualified legal aid

Yes, these are from 1975. And if you have a disability, you’ll recognize these as basic rights. And guess what? If you don’t have a disability you’ll most likely (hopefully!) recognize these as basic rights, nonetheless. And yes, we have progressed quite a bit since then as a species. How have we done with upkeeping the rights of 15% of the human race? Embarrassingly, not nearly enough. But this isn’t a post to make able-bodied (and/or able-minded) individuals feel bad about their privilege of health. You heard (read!) that right- If you don’t have a disability, you have the privilege of health. This, as you now know, isn’t a privilege for over ONE BILLION other human beings across the globe. Let that sink in.

Yes, these are from 1975. And if you have a disability, you’ll recognize these as basic rights. And guess what? If you don’t have a disability you’ll most likely (hopefully!) recognize these as basic rights, nonetheless. And yes, we have progressed quite a bit since then as a species. How have we done with upkeeping the rights of 15% of the human race? Embarrassingly, not nearly enough. But this isn’t a post to make able-bodied (and/or able-minded) individuals feel bad about their privilege of health. You heard (read!) that right- If you don’t have a disability, you have the privilege of health. This, as you now know, isn’t a privilege for over ONE BILLION other human beings across the globe. Let that sink in.

And now let’s acknowledge that while we all really want to do our best to help those who are lesser privileged that us, it can be really intimidating to think about what you, a single person – or a person in a relationship, however healthy or complicated- can do to bring about meaningful change to help individuals with disabilities. And to do this is a way that is respectful to their rights as human beings, without being disrespectful and/or patronizing. The answer, for a lot of people with disability, is access. And, no matter where you live, there certainly are things you can do to help build a society that is more inclusive to those with disability. Here are a few simple ways you can make a difference right where you live. These are really simple initiatives to take on, but can be a really big deal to help those with disabilities. Once you get through the list below, you’ll probably wonder why you haven’t joined forces with friends or a community to do this already! So here goes:

• Curb ramps. Footpaths help us all safely get around to where we want to go. If your feet/legs didn’t work as well, or if you didn’t have feet/legs, you’d have trouble moving around where you live safely even if you had a crutch or a wheelchair. Ramps (or slopes) on curbs aka footpaths can, as you can imagine, make it much easier for a person with impaired mobility to use the footpaths, and experience a safe walk outside of their home. Just like everyone else. You may not be able to do this for your whole city, but perhaps you may be able to at the area you live in, or your ward. Team up with similar minded individuals, and work with your ward officials to make this happen.

• Ramps on public transportation. If you’ve ever fractured a leg, or sprained an ankle, or if you have knee issues, you know it’s much more effort (and can be VERY painful or just impossible) to climb onto an elevated surface. Now imagine ramps on footpaths allowing you to get to a bus-stop or a train-station, but no ramps allowing you to get onto the bus (or train, or even get to the train platform) without someone having to physically lift you like you were a sack of potatoes or a child, and not an adult human being. Now imagine having to deal with that every single day. Now imagine having ramps on busses and inside train stations, and being able to get to where you wanted to independently and with dignity. That’s what ramps on public transport can do for those with disability.

• Accessible toilets! Everybody needs to go when they need to go. And people with disability don’t have special bowels that don’t move when they’re in public. Going to the loo when nature calls isn’t something that should be a privilege of only able-bodied people. Thankfully, most malls, hospitals, and educational institutes have accessible toilets these days. Find out if your place of work, or your favorite restaurant, or that movie theatre has toilets that are accessible. If not, a conversation may help sensitize them to something they may not have thought about. Sometimes, it can be tough to anticipate needs that are different from our own, and a conversation can help. You’d be surprised at how willing people may be to implement your suggestions.

• Accessible handles and counters. This one instantly makes sense, right? If I were in a wheelchair, everything is probably too high for me to reach. An additional door handle at a lesser height, and a section where at least one counter is lower (at the bank, at the restaurant, a coffee shop, the library, at the hotel reception, at the grocery store, at the pharmacy, at the hospital, at the ticket counter, etc. You can come up with a much longer list on your own, and I really don’t want to make the content between these brackets much more than it already is) are good places to start.

• Considerations for those with hearing and/or visual impairments: For some individuals with disability, their limbs function just fine but they may have impaired hearing and/or vision. Understandably, it is also important to consider placing signs, or audio recordings at signals (as there are in many countries) to help individuals with hearing/visual disability navigate and access their city better.

• Individuals with Autism Spectrum Disorder may be sensitive to loud noises, bright lights, or sudden changes in their surroundings. This may be an extremely specific social disability to focus on and, oftentimes, it may not be possible for us to control the environment we’re in. However, it is possible for us to manage our own responses to individuals who are having a hard time or a breakdown, by first asking if they need assistance, and then respecting their acceptance – or refusal – of your offer to help. 

• Encouraging social inclusion. Isn’t it strange that we don’t see as many people with disability around us? How many of us know a person with disability? Or has a friend, a classmate, or a colleague with disability. A lot of this may be related to access, and the more accessible we make the places we live in, the more we will normalize individuals with disability as part of community and society. It is also important to encourage social inclusion and integration of individuals with disability in the community. This can be done through events, or through the development of organizations aimed at amplifying the voices/needs of people with disability. If you are a business owner, make it a policy to hire in a way that is inclusive of those with disability. You would be helping by setting a strong example for inclusion, integration, normalization, and acceptance of persons with disability.

• If you’re a healthcare professional, be extremely mindful of any biases you may have against individuals with disabilities. This becomes especially important for those working in prenatal settings, where the decision to “allow” or “disallow” a life is based on perceptions of “normal” and “healthy”. It’s important to consider that, in an infectious disease model, the illness is a pathogen and the intent of medicine is to eliminate the illness-causing pathogen. Now that we’re in the age of genetic medicine, where genetic testing is becoming more and more accessible and affordable, we must be conscientious of redefining disease and health from a genetic disease model and NOT an infectious disease model. In medical genetics, in order to keep ourselves from going down a disturbingly eugenic path, it is critical that we understand that what’s “defective” or “non-functional” is a gene, and NOT an individual. This MUST be reflected in medical training and in the training of genetic counselors.

• If you’re a city official, you have the power that us mortals don’t, and you can direct some of your clout for the greater good. We live in a society that underrepresents persons with disability, and changes to accessibility, inclusivity, and policy can make a huge difference to not only individuals with disabilities, but also to our communities and society at large.

• If you’re a regular person like I am, it can seem difficult to find your voice within your local government. But, it’s much easier than you think! Think about what you would like to do to contribute to improved access and then find like-minded individuals as motivated as you, it could be a group from your building, your area, your social network, your college, your workplace, your gym, anywhere! You can then meet with the elected authorities from your ward/district and begin a dialogue. As discussed previously, a conversation may help sensitize them to something they may not have thought about, and you’d be surprised at how willing your local authorities may be to improve its community better. For all.

And that’s exactly what the theme of International Day of Persons with Disabilities (IDPD) is- its a “day for all”. All human beings. So that we all have equitable rights and fair access to make our lives better. Because, as I said before, “normal” is subjective, human beings remain human beings, and the rights of individuals with physical, intellectual, or social disability are human rights. Let’s make a better world for each and every one of us.

Happy International Day of Persons with Disabilities (IDPD)! To the ONE BILLION people in the world with disability; and to us all.