Accommodations move us closer to equality but not equity. The presence of accommodations implies a belief in an “us” and a “them”. One group benefits from default inclusion, while another group either raises a collective voice, or is de-facto excluded. Instead of designing our world for others different than ourselves, we must design our world together. It is a quicker way to achieve a more just world.

The “abled” community needs to challenge our perspectives and do our share of the learning required to see things from another perspective.

An example I saw from Twitter that made an impression on me was how someone explained the idea of combinations and permutations of the five human senses: sight, hearing, smell, taste, and touch. The commonly-held belief is that lacking one (or more) of these senses leaves you deprived. Without one of these senses, your potential is limited and you deserve to be pitied.

Multi-sensing > accommodations 🔗

So, what does it mean to be multi-sensing? Most of us see our five senses (sight, hearing, smell, taste, touch) as a fixed state of sensory stability. These senses and basic mental stability are socially-assumed as always present. They define how we individually experience life.

Often those lacking one or more of these senses are seen as deprived. They are perceived as missing something or to have lost something they can never fully regain. The absence of a human sense comes with the added psychological burden of living in a world where you are often the afterthought, the “new use case”, the countless trials of countless beta versions of any kind of software that might help overcome the disadvantage of “missing” a sense or mental disability.

I suggest an alternative way to design for accessibility and inclusivity. A personal deviation is not written off as “missing” something, but instead as a new combination of senses gained. Designers should assume an expected and guaranteed variable of this new combination. Accessible design must be a first-class citizen in early project management planning.

To put it another way, observe the presence and lack of senses among us as a matrix of combinations, instead of large swathes of characteristics assumed to always be present. We unlock the best of our design knowledge to think in the pursuit of access to the greatest many instead of “what ticks off the box”.

Before, we saw an accommodation as when a specific feature is added to software for someone lacking one or many senses. But we must shift from accommodations to full inclusion. Accommodations are acknowledgements of disability. It assumes a fixed state where a set of critical features to guarantee usability will always lag behind for a subset of people. True equality is seeing access for those with disabilities as equal to the design of features for those with five active senses.

Featured image photo by Matthew T Rader on Unsplash.
Modified by Justin Wheeler.

This article introduces Ehlers-Danlos Syndrome, its symptoms, how to support someone living with EDS, and simple actions anyone can take to help.

Ehlers-Danlos Syndrome: What is it? 🔗

Ehlers-Danlos Syndrome is an inherited, genetic disorder caused by a defect in how the body produces collagen. Collagen is a protein that the body uses and depends on for producing connective tissue. It’s like the “glue” of the human body, keeping skin together and in proper form.

Hyper-mobility is one of the most common symptoms. “Double-jointed” is one way to describe hyper-mobility, but it’s not really the same thing. Moderate to severe chronic joint pain is common. Depending on the classification of EDS, there are a variety of chronic symptoms, ranging from frequent tearing of muscles to heart disease.

Ehlers-Danlos Syndrome is not easily visible from the outside. You can look at someone who has EDS and never realize they live with a disability. For these reasons, it’s known as an invisible illness. Invisible illnesses come with an extra challenge as the person with the disorder or disability physically looks fine, but may suffer from extraordinary amounts of pain that an observer can’t see.

For a moment, imagine you’re fighting the flu and obviously not feeling well. When you give an excuse for work or school, someone tells you, “Oh, just shake it off, how bad can it be?” Obviously, you’d think they’re crazy—you have the flu! You can hardly get out of bed! But what if this was the way things were, if you were told this whenever you were sick? This is a glimpse of what it’s like living with an invisible illness.

Today, not much is known about Ehlers-Danlos Syndrome. There isn’t much research on it and there is no known cure (although stem cell research seems the most promising solution). Those living with EDS usually use external support (e.g. wheelchairs, bracing, etc.) or different forms of therapy to help manage the illness.

Living with Ehlers-Danlos Syndrome 🔗

Those living with EDS face daily struggles that affect how they are able to live their life. There are countless testimonies online about what it’s like to live with Ehlers-Danlos Syndrome. Some days, the pain is crippling to the point where it is almost impossible to leave bed. You can read stories from those living with EDS at the following pages:

• rarediseaseday.org
• librarianinblack.net

Supporting someone with EDS 🔗

If you know someone living with Ehlers-Danlos Syndrome, it’s difficult to know how to support them. Since not much is known, one of the most important steps you can take as a caretaker is to learn what you can about EDS and how your loved one is specifically affected by it.

Reaching out to online communities or searching for resources are some ways to help you develop your own personal “toolbox” for helping your loved one. The Ehlers-Danlos Society has information you can read about being a caretaker and how to help someone with EDS and yourself.

Work on developing your own listening skills and mutual, two-way communication. You need to develop patience as both you and your EDSer learn and experience life with EDS. Counseling on how to best communicate can be a valuable resource. Be willing to accept your own feelings and emotions too. Your feelings are not invalidated as a caretaker either, and accepting this will help both you and your EDSer.

Above all, remember that your loved one is more than their illness. There’s more to life than Ehlers-Danlos.

What you can do now about EDS 🔗

Information is valuable. Information is never easier to find than in the twenty-first century. But imagine not being able to know: to search Google and not find an answer about something you face everyday. For something like “how to feel better” or even how long you’ll live. Information and research is one of the key needs of the Ehlers-Danlos community around the world. The Ehlers-Danlos Society is a 501c3 non-profit organization that drives research and education initiatives, awareness campaigns, advocacy, community-building, and care for EDS patients.

You can consider making a direct donation. A recent deliverable was the 2016 Ehlers-Danlos Society International Symposium, with the goals of updating the diagnostic criteria of EDS and developing standards of care that are missing in professional medical practices.

Shop on Amazon? If not a direct donation, consider using AmazonSmile to have part of your Amazon costs donated to the Ehlers-Danlos Society. Amazon will donate 0.5% of the price of your eligible AmazonSmile purchases (side note, they’re listed by their previous name, “Ehlers-Danlos National Foundation” in AmazonSmile).

Zebra by m. turan ercan from the Noun Project

Dedicated to someone who taught me to see life from another perspective

Many times, I’ve sat down to write this. The same number of times, I never finish and delete it all. Many times, I’ve wondered how to say the things I want to say. I’ve been doing this for years. However, the motivation this time is different.

Two important events made me realize that writing this is important. A conversation with one of my friends about what was happening in my life reminded me of the critical, psychological benefit of communicating and being honest and open about myself. The second thing was an insight from an article I saw on Twitter, about Sheryl Sandberg and dealing with grief. The profound insight in the article to me was the intersection between effective leadership and expressing emotion. “Expressing emotion when you’ve gone through extreme pain is not weakness. It is humanity.”

This post isn’t like anything I’ve written before, but it is a necessary next step for me to move forward.

I live with depression.

It’s a battle that has various turns and twists, and different highs and lows. There are days, weeks, even months where I don’t feel its weight. But there are also long periods of time where it envelops me and becomes my world.

There are some insights I’ve learned over time, though. In the spirit of being more open and true to myself, I want to share some of my experiences and also some advice from those experiences.

In my own world 🔗

Others who have experiences of their own can recount similar details to the looming feelings that overtake them. Sometimes it comes at the most unexpected moments, even if everything around you is going right. Yet, there it is.

The looming feeling deep in your stomach.

The heavy weight that presses down on your consciousness.

Sleeping early and waking up late, or not sleeping at all.

The sucking of your productive energy towards meaningless tasks, like spending more of your time reading about the lives of other people instead of living your own. The feelings have a wide range. Regardless of the specifics, anyone who has walked this quiet path can take these general points and recount them into their own story.

The most difficult part is the creeping feeling when the depression begins to take hold, but it feels like there’s nothing that can stop it.

Now that I’ve had more years to reflect on my depression, I’m better able to pick out some of its origins and characteristics. Even knowing these things, there isn’t one form of depression or one way it looks like. What form it takes on depends on contextual evidence and what’s happening around me.

Depression is… 🔗

Sometimes, depression wears the mask of incompetence. It’s not uncommon for me to set too high of a bar for myself to reach. When I don’t meet those expectations or if I fall behind, my self-esteem slowly erodes. One missed assignment or deadline turns into two, then four. What was a small problem is exacerbated into a chain reaction of many problems. This builds the feeling of incompetence. Navigating the web of problems after it is spun becomes difficult and drains all energy. Personal motivation decreases leaving me wondering why I bother at all.

Sometimes, depression causes you to cast poor comparisons. It’s looking at the highlight reel of other peoples’ lives while you’re going through the cut-out reel. I wrap myself up in the achievements and successes of others. It’s an echo chamber of negative thought, where the lives of friends, family, or acquaintances remind me of my self-perceived incompetence. Everyone seems smarter and brighter. It looks like everyone else has it together when I’m struggling to meet deadlines and remembering to eat. Social media aggravates this. The entire premise of social media is to share the “highlight reel”, to show off when everything in your life is going right—which is why social media is the worst thing to look at when you’re in the trenches.

John Green shared a video recently about how we frame our lives that describes this well.

In which John discusses the ways we frame reality, the distance between the selves we put online and the selves we inhabit, and the challenge of understanding public lives as self-portraiture rather than reality.

There are other forms that it takes too. But underneath its form, the emotions are usually the same (at varying intensities). It’s a spectrum of feelings and activities, ranging from loss of interest, difficulty finding motivation, worthlessness, unusual sleep patterns, nail-biting, and at its worst, wanting a permanent way to escape. This goes without saying, over the years, I have become more adept at pushing out the harsher thoughts by recognizing them and reaching out to a close friend when I feel that way. But the spectrum varies depending on the surrounding events.

Invisible 🔗

My biggest challenge was how I kept it all hidden. Only a handful of people knew about some of my difficulties and what was going on behind the scenes. There were two critical fears that always prevented me from stepping out of the dark.

If I were to be honest about what I was going through, I didn’t want to be treated differently by others, personally or professionally. I’ve always felt that if I presented an idea or had a conversation with someone, agreements or disagreements were because of the ideas being conveyed, not because someone cast judgment on what they think I can handle. This was and is valuable to me.

But why was this a fear of mine? We have a problem of “talking about it”. The stigma is that it’s wrong to “feel bad”. It’s not comfortable to talk about. It’s difficult for others to sometimes relate. The tone that people speak to you changes. This stigma created the fear that every conversation would become heavy-handed with special treatment. What I realized is that this fear isn’t justification to keep the lights off.

By becoming transparent about it, my hope is that this won’t be the case. I don’t want to be treated differently than how anyone has already treated me. If you’re wondering about how you can help, this is one of the best ways: to treat me the same way. (Although more hugs are never something I complain about!)

However, there was one more fear that kept me in the dark.

To become more comfortable with sharing these emotions, it means being honest when someone asks how you are and reaching out for help when you need it. But it can be a lot to ask someone to help untangle the thick cobwebs when you’re having a hard time seeing through. From being on the receiving end before, I knew how it can be draining (even if it’s worthwhile and makes a difference in the end). My fear was putting too much burden on others and draining their energy on problems that don’t concern them. Everyone has their own stress and problems too. As a result, I rarely shared my pain and difficulty with others to avoid placing more stress on others.

When you’re afraid of adding more stress onto others, it impacts the type of actions you make. It might look typing out a long message when someone asks if everything is okay, then deleting it to say, “Everything is fine!” Other times, it’s the confusion over how to answer a simple question like, “How are you?” Sometimes it’s simply feeling alone.

But even though this is a fear, there is also a balance and a way to prevent adding so much stress to a close one’s life. Real relationships don’t flow like a river, in a single direction. It’s like a two-way road where traffic passes in both directions. It’s unsustainable for one person to only lean on one person. It goes both ways and the communication has to be two-way to be successful. However, letting everything out at once after it’s built up for so long isn’t the answer either. This is that overloading stress that creates this fear of sharing in the first place. Communication needs to be early and often. You have to share and you have to be honest.

I realized these fears shouldn’t keep me from sharing my story. The benefits of being open and sincere outweigh the perceived negatives from these fears. It takes a lot to throw yourself out in the open, but once it’s out, some of the extra weight falls off.

Opening the blinds, turning on the lights 🔗

But my purpose with this post wasn’t to only reflect on my personal experiences either. I hate raising problems without offering means to solving them. There are plenty of ways to learn about how to deal with depression. You can talk to a therapist and seek medicine too. But I wanted to share some of the things that have helped me get out of the hole and fight back.

However, none of this advice should be taken over professional medical advice. I am not a doctor and I won’t act like one. If you are experiencing severe depression, please take the first step and talk to a doctor.

Seriously… talk about it 🔗

Maybe this seems like common sense. Maybe you are afraid of what others might think of you if you tell them “the truth”. What talking about it looks like is up to you. Whether it’s a trusted friend, a family member, or a trusted individual, psychotherapy (or talk therapy) has significant benefits for helping you put your best foot forward. Whether it’s formal or informal, professional or friend-to-friend, getting it out there helps. It lets you have a chance to decompress from the build-up of stress. It also gives someone else a chance to remind you of the positive counterpoints to the negative thoughts.

Sometimes the best responses I’ve received is just an affirmation of love. Telling someone that you value them and that you love and care for them goes a long way.

Find your detox 🔗

Your “detox” activity depends on you. Everyone has a different form of what helps remove them from the negative emotion and feelings. The purpose of detoxing is to give yourself a chance to separate from what’s providing the stress and to step away, even if for a short while. Usually, one of the best first steps is unplugging from the laptop, the phone, or other digital ties. Some time off from the grind will help you to refocus and bring your mind to a better place.

For example, some of my detox activities are listening to the right music and taking a walk. My music might be my best therapy. Sometimes it’s having a conversation with a close friend about something completely random. Other times, it’s writing a few lines into a notebook. What the activity is depends on you. But it’s important to find those positive, uplifting experiences and remember them when your vision becomes cloudy.

Look up, even if it feels wrong 🔗

One of the things that I’ve started to practice is persuading my mind how to think. Even when everything looks or feels completely awful, I make myself look up. I tell myself that I’m feeling good, and I make myself genuinely believe it. I put my entire faith into that positive energy, of what I know things should be. It’s a challenge. It’s not easy. I can’t always do it. But it’s an art of persuasion. And with any art, it takes practice.

The challenge is to sincerely look for the positivity and happy emotions that are around you. You have to tune yourself to the same emotional frequency as the positive energy. Like a radio signal, you have to turn your channel to receive that positive energy and emotion. And if you’re ready to receive, it will present itself.

In the more difficult times, this is the hardest advice to follow. The negative thoughts creep back into your mind. But recognition is key. To see and identify those thoughts and consciously acknowledge them for what they are is the first step. After identifying the negative energy, you have to turn your own channel. Instead of thinking, “I don’t want to feel that way,” think of the way you do want to feel. Think of the positive energy, emotions, experiences, or memories. Tell yourself, “I want to feel this way,” or “I want to feel good.” Even if it seems trivial and impossible, invest your energy and focus into attracting that positive energy. If you convince yourself that it’s there and you are going to find it, circumstances change. They have a strange way of working themselves out. But you have to know what you want.

Even when it feels like you’re in an emotional headlock straight to the ground, twist a little more to look up. At the sun, the light. The positive emotions and energy in life. And keep looking up.

Remember what’s good 🔗

Depression isn’t a one-time illness. You don’t have a revelation one magical day and are suddenly “cured” of depression. It’s a cycle, with ups and downs. It requires balance and powerful support systems to stave off its hardest moments. The first step is recognizing the tug-of-war and identifying when things start to feel wrong. Make the steps to pull back from the things that bring the negative thoughts and energy. Remember what you do want and how you want to feel. Remember what’s good.

It took me a long time to write this. For six or seven years, I’ve tried to find the right words. But what I realized is that if I wait for the right words, I’ll wait forever. Even with the advice I gave, I’m not perfect and I’m not always able to fight it every time. This is something I actively live with. I have good days and I have bad days. The bad days are what brought me to write this in the first place. But the sun always comes up, one way or another. That’s what I always have to remind myself.

There are many stories out there. But this one is mine. Thank you.