Frank: Thanks, Matthew and Apeksha. Before we get into anything, let's first define what a disability is. The Centers for Disease Control, CDC states, "A disability is defined as any condition of the body and mind that makes it difficult for the person with the condition to do certain activities and interact with the world around them."

Apeksha: Frank, this is where I can jump in to show how disabilities have three dimensions, as defined by the World Health Organization, the WHO. These include impairment, which is in a person’s body, structure or function or mental functioning. Examples of this impairment include loss of limb, loss of vision, or a memory loss. The second is activity limitation, this is the execution of a task or action by an individual. These examples include difficulty seeing, hearing, walking, or problem solving. Last is participation limitation, this is the person's involvement in a life situation, so normal daily activities examples would include working, engaging in social and recreational activities, and obtaining healthcare and preventative services.

Frank: Thanks for that definition, Apeksha. So as I understand it, I would be able to participate in something you couldn't and vice versa, but we both still have a disability. However, to others they may not see or believe that we are showing these dimensions of disability.

Apeksha: Yeah, that is spot on. A personal example for me is that my moderate hearing loss does not impact me as much compared to someone who is deaf. There could be a degree to how severe that disability is. Not being able to hear whispers is an activity limitation that would get in the way of interacting with people who are quiet and mumble, but this would not be a disability for someone who has normal hearing but is completely blind.

Frank: In that case, for example, one end the spectrum might be a blind person who uses a cane or a guide dog. Those are aids that make their disability visible, while at the other end of the spectrum, maybe someone who has cataracts, a common disability that isn't visible from the outside, but they both have a disability, sight impairment, regardless of if it's visible. So Apeksha, what are the statistics on adults living with disabilities in the US?

Apeksha: Data from the Disability and Health Data System from the CDC has shown that one fourth in US American adults have a disability. However, all topics today touches on a unique part of the disability community. Invisible disability. Frank, why don't you define what an invisible disability is? Frank: One fourth of Americans, that's quite a lot. Sure, I'd be happy to. An invisible disability is a type of disability that you can't see from the outside. It can be physical, mental, or neurological. So disability goes beyond just visible disabilities and incorporates invisible ones as well. Apeksha, how many Americans with disabilities have an invisible disability?

Apeksha: That's a good question, Frank. In a proclamation by governor Gretchen Whitmer of Michigan, the research has shown that 10% of Americans who have a disability also have an invisible or hidden disability as well. A cool fact here, she declared only the week of October 16 to the 22nd in 2022 as invisible disability week over Michigan at that time.

Frank: That's a significant number of people living with an invisible disability. Yet, it seems like it's not talked about enough. Good for Michigan for making an invisible disability week. It's important to have things like that to raise awareness for invisible disabilities.

Apeksha: That is so true. I think our special guest here today can explain why there is the confusion around invisible disability, accommodations, and resources, and even highlighting one of Matthew's disability with sight impairment and how it has affected his life.

Frank: I think to start off, Matthew, could you explain what you think is the most common misconception about invisible disability?

Matthew: Absolutely. The most common misconception is that most people don't understand the terminology and the differences between a person who is legally blind versus a person who is blind, or a person who is hard of hearing versus a person who is deaf. I wear glasses, use a normal smartphone without large print, but I occasionally use a white cane and that often confuses people. Once you start trying to add in additional disabilities, most people do not understand how the intersection can be that much more challenging. This is especially prevalent for invisible disabilities where someone may not appear "disabled."

Frank: Thank you, Matthew, for that great point. You acknowledge the intersectionality of disability. This is important because it shows that having a disability is multifaceted and goes beyond stereotypes.

Apeksha: Right. Matthew, Frank and I are curious how your invisible disabilities have impacted your activity limitations specifically, like what accommodations are missing or not adequate enough for people with invisible disabilities?

Matthew: The biggest missing piece is signage in public transit, both audible and visible. If one doesn't work, it can make things extremely complex and difficult for someone with a disability, especially an invisible disability. I was once on a subway where an audible announcement was made regarding a time delay on the subway. A man to my left had an ID card that stated he was deaf, so people around him knew, so I typed it out on my phone, showed it to him and explained what the announcement was saying, and he appreciated the blind man filling him in on the auditory announcement he couldn't hear. I joked to him that together we can see and hear.

Apeksha: Despite the inconveniences you have faced, you have managed to navigate the difficulties when it comes to public transport, though it is unfortunate that the barriers were a hassle. Your personal experiences can speak to many who do have an invisible disability. You are surrounded by an inaccessible environment, so I think we can confidently say that having an invisible disability can be frustrating not because of the barrier, but the stigma and the lack of acceptance as well.

Frank: I definitely relate to that. That's why it's so important that we talk about it because our disabilities aren't always obvious. Some people might think that we're faking it or exaggerating, and with that comes a lack of support, assumptions about the accommodations we need, and inequitable work and school places.

Apeksha: It is sad how that is true when you consider the reality of it all. Matthew, we would love to hear what you have to say about this. What are some of the things that would make society or the world more accessible to you and other people with sight impairment?

Matthew: A lot more information about public transportation. A big aspect of my life is pre-planning routes, making sure I have significant times between stops when I have to transition from one type of transportation to another because there's often limited information about how to get from one area to another without having to ask for assistance, which is even more difficult if you have an invisible disability. If I had a dollar for the number of times I've walked in the wrong direction, changing lines on the subway because of a lack of accessible signage, I would be a very wealthy man. However, one thing I've discovered in recent years is the wonder that are travel agents for traveling with a disability, especially an invisible disability. They take care of everything and if you tell them you need extra help with something, they'll set it up in advance and make sure someone meets you wherever you start and end. This is no cost to you as a traveler, which most people don't realize, and you'll often get extra incentives and upgrades because of using a travel agent.

Frank: That makes a lot of sense. Something that I find interesting is how the accommodations you mentioned make travel more accessible for people with sight impairment, but how they actually increase accessibility for everyone. Pre-planned routes and travel agents would also make travel more accessible. For example, to people who struggle with things like time management and spatial awareness, like myself, but people who don't have disabilities also benefit from many accessible practices. They usually make life easier for everyone. It's a win-win.

Matthew: Absolutely. It's amazing how many of the changes I make or shifts to my environment to make things easier for myself often benefit my wife and family at home and in public. Signage, visible announcements, audible announcements are intended to help those with disabilities, but how many people miss the audible announcement and rely on the sign or textual announcement to "hear what people are saying?" It's subtitles for real life. One interesting benefit that my wife enjoys when we're traveling is the fact that I can jack my hearing aids all the way up and make out muffled announcements or specifically request certain accommodations that really benefit us together, rather than just me, even when I need it as an accommodation. For example, I can get on a plane before most people and this helps give me extra time to find my seat and get settled without feeling rushed, because I'm slowly looking at every row number and seat letter to find where I'm supposed to sit. This has really improved since I was younger and first learning how to navigate with an invisible disability.

Frank: That's so cool, Matthew. Since accessibility actually ends up benefiting everyone, there's no reason not to implement it.

Apeksha: Exactly. You got to take advantage of this accessibility whenever and wherever. Switching gears, Frank, I think it is so cool that we represent the youth voices in our podcast today. Having to navigate invisible disabilities at a young age makes us aware of the services, system, and policy that are either non-existent or that hinder the involvement of people with health conditions in all areas of life. But Matthew, you were once our age, not that long ago. My question is did you have resources when you were young to learn about invisible disabilities?

Matthew: I did, but they were not as accessible as they are now. I got heavily involved in non-profit organizations and engaged with state agencies that provided support for people with disabilities. However, this often takes a significant effort to find and get connected. You may even need a referral from a doctor, so it's always important to talk to medical professionals or even anyone you know who has a similar disability to be able to get connected even through online access.

Frank: Mutual connections and referrals are definitely important, especially from schools. I know many youth find work specifically that way. With that in mind, what can youth do to increase access for themselves and for others with invisible disabilities in the educational system?

Matthew: Advocacy is a huge part of what you need to do to make sure you get what you need. I don't shy away from reaching out to organizations, politicians, or anyone when I find that something needs to be done. Unless I take initiative, it's unlikely that anything will change. In education, that's talking to counselors, disability, or accessibility services offices, they're the ones that you need to integrate with. Even if you don't need their help right now, just make sure you've done all the initial paperwork so you can get something done faster. The best analogy is you sign up for everything and if they ask what you need, you just add nothing at this time. That way you leave that door open for help when and if you need it.

Apeksha: Advocacy is the reason why we see those changes with accommodation today. As we have mentioned earlier, times have changed. For me personally, I utilize many technologies such as a microphone and plugin to help me with having hearing aids in the classroom. Different in part thanks to the 504 accommodations from the Rehabilitation Act of 1973, which increased awareness of the needs for students and employers. Matthew, how do you think those resources look different for youth today?

Matthew: Information accessibility, a lot more access to the internet. When I found out about my vision, I contacted a charity by email. They had a “center”, but it was really one of the board members' basements where we did all the 501c3 paperwork. Years later, it became a joke because we initially thought about going out to the “center” as it was only a couple of hours away from my hometown. At that time, Google map street view wasn't really a thing, so we didn't know it was just a house. Corey, the board member said, I would've invited you in to see the “center” aka the old desk I use in my basement. It's much easier to find people in groups to share experiences now with than it was even 20 years ago. Additionally, with knowledge around limitations, it's much easier to find out about new careers and job opportunities that may align with your interest and capabilities. I don't have to read newspapers to find job ads anymore. I can apply with auto-filled information, use text-to-speech to read things quickly or use built-in speech to text software for writing. Back in my day, that was extra software you had to buy for a computer. Additionally, apps like Uber and Lyft make transportation easier, but at an increased cost, so teaching youth how to use these apps early to take advantage of what I was missing out on, freedom of movement.

Apeksha: It's hard to forget how much the topics of education and careers intertwined with us having an invisible disability. The intersection of that in our daily life is something we don't have a choice to forget. Matthew making this podcast will definitely have an impact with the youth that listen and tune in. If there is one takeaway piece of advice you could give to youth with invisible disabilities, what would you say?

Matthew: Take advantage of whatever resource exists that can make things easier. Engage with that organization, engage with that charity. Find a group that can teach you what you need to know and what resources exist out there for you. Many of the benefits and organizations I found were purely by accident. If something doesn't feel right, you have to speak up. For example, a coworker of my mother's was complaining about their daughter's caseworker from an agency at lunch to another coworker. My mother interjected and started talking about the services I got from the same agency. Using my connections to that agency, I was able to push for her to receive those services and address the underlying issue with a lack of institutional knowledge, where a caseworker can make or break someone's experience with that agency. I mentioned I was doing this podcast to my parents about invisible disabilities and my mother immediately mentioned this story because of how important it was to her coworker's daughter. Advocacy is key even if you don't individually benefit from it.

Apeksha: Matthew, that was the perfect way to sum it all up. The lived experiences that you have faced provides an authentic viewpoint to how invisible disabilities has been a struggle and a blessing to you. But what was most important was using a platform like this to shine a spotlight on the stories of others, to create a sense of empathy and understanding from people who don't have an invisible disability. Most important of all, what you have done today is the key to building that bridge to show that despite the differences that set us apart, we are more similar in our struggle than we are not.

Frank: Exactly. Thanks, Apeksha. Whether people consider their disabilities to be hidden or invisible, there is one thing for certain, no matter how much others might deny our existence, we are proud to be who we are with the disabilities that make us unique. I like this quote from the CDC, "Although people with disabilities sometimes refers to a single population, this is actually a diverse group of people with a wide range of needs. Two people with the same type of disability can be affected in very different ways. Some disabilities may be hidden or not easy to see."