Living Mighty Well

This week was the start of Disability Pride Month. We’ve loved seeing posts from our Friends in the Fight sharing their own stories of disability, both the challenges and the pride! One theme that comes up a lot in lived experiences of disability is the nuances of visibility. What makes some disabilities visible? Whether from physical markers, mobility aids, or other medical devices, how does disability visibility change the way individuals and systems in our society recognize disabilities as “valid”? How does it affect our ability to get accommodations and quality health care? 

@zebratissues, @mxdevin, @thediabetesdiva pictured above!

Here are a few things to keep in mind about disability visibility:

1. Mobility aids and other devices are not shameful

Having a disability can be challenging. Some disabilities, however, don’t need to hamper the quality of life with the right accommodations and tools! Devices like wheelchairs, canes, walkers, hearing aids, feeding tubes, vascular access catheters, and so many more, are incredible innovations that can drastically improve life with disabilities. They should be viewed as beautiful, life-giving tools.

Unfortunately, abled people – and representation in the media – often view these tools as negatives. They are visual reminders that someone faces challenges, which bring up uncomfortable emotions. It’s often those closest to us who have the most trouble with these visual reminders because they feel the grief involved in watching someone you love struggle. Mobility aids and medical devices are also markers of difference, something our society hasn’t always taught us to embrace. 

Disability communities are working hard to remove the stigma around devices. There is nothing shameful about using the tools and technologies available to enhance your life! We all do this – we use phone reminders to help us remember things. We use cars and bikes to make travel easier. And we use subtitles in situations when we can’t understand something being said. So why would there be anything shameful about using a wheelchair to get around? Or a cane for balance, hearing aids, or a tube to get the nutrition or medication that helps us stay strong? 

2. Not all disabilities are “visible”

Many disabilities are visible. Our society has taught us to look for wheelchairs, white canes, or scars as a proof of disability. But this is a wildly incomplete picture! People may have disabilities related to hearing, vision, memory, comprehension, communication, pain, energy, fainting, balance… You likely know someone who struggles with one of these issues, possibly without your knowledge! They may qualify for accommodations in school, at work, when traveling, or in receiving income. These barriers can be just as disabling as the disabilities we are taught to look for. 

Invisible disabilities come with their own benefits and challenges. When no one can tell that you are disabled, you don’t have to ward off as much stigma. You can “pass” as abled when wanted. You can choose who is worth telling and who is not. And, you can present any of your identities when meeting someone new, without “disabled” being the identity they first notice. 

Invisibility is not always a benefit, however. It often requires more communication. When seeking accommodations such as different lighting or a space reserved for people with disabilities, we are often asked for justification. “You don’t look disabled” can be used as a challenge, requiring further advocacy. This invalidation of our needs can feel emotionally draining, even triggering. It may be more difficult to receive the disability payments, health care, or accommodations we truly need. We also may be more likely to push through dangerous situations rather than seeking support because we are used to trying to pass abled, or because we are too exhausted to deal with the pushback.

The gray area

And then there are the disabilities that exist in the gray area between visible and invisible. We may have physical markers that are sometimes hidden, or devices that we don’t need all the time. In this gray area, we experience the benefits and challenges of both disability visibility and invisibility. It is ok to go back and forth in whether or not your disabilities are seen! It is ok to use these times of visibility to find support and community, or to just show pride in your disability! We use this flexibility in our other identities – wearing a religious symbol in some situations but not in others, or sharing our sexual orientation with some but not disclosing it with others. It is normal and does not mean you are faking.

Mighty Well products were created out of this gray area. Our PICCPerfectⓇ PICC Line Covers are made to keep medical devices discreet in those moments when you’d rather not have your health be at the forefront of people’s minds. But with bolder color and pattern options, they can also be a fantastic conversation starter when you’re feeling proud and wanting to be visible!

Our medical backpack is made to look like a regular designer backpack, so that you can infuse, tube feed, or just carry all of your medical gear on the go, without anyone having to know. But it can also be a way to proudly bring that part of your life out of your private spaces, to bring others into what your life is really like. And for those times when you want the world to know that you need them to mask up or give you space, but don’t want to have to justify or advocate, you can let our immunocompromised gear do the talking.

Click here to see more of our products designed by patients with disabilities!

3. Disabilities can wax and wane

Not only is it ok to let your visibility be fluid, but sometimes disabilities themselves can come and go. Someone with disabling headaches may be out and about one day and unable to move the next. Cognitive impairment can fluctuate. Pain flares and joint dysfunction are not always steady. Even disabilities involving vision or wheelchairs can go up and down over time.

This can pose a challenge since we tend to view people as either abled or disabled. But someone who lives with disabilities can also have times when they don’t experience these challenges and don’t need accommodations. This does not mean that it is made up or that they don’t genuinely need these supports at other times. It also doesn’t change their identity – people may identify as disabled even if their disability hasn’t flared in years. Our experience with disability can be formative in the development of our personality, how we live every day, and in the communities we are part of.

Many folks with disabilities are accused of “faking” when in these times of health and strength – and the internet has only heightened this. These periods should be a time to live life to the fullest, without worrying about this perception. It is important to be a source of support for people no matter how abled they seem, instead of assuming that they aren’t disabled anymore or minimizing the challenges they faced previously. 

Remember also that you might not know what work is happening behind the scenes. Perhaps this period of ability is only made possible by significant effort, medications, therapies, or lifestyle changes. The time, energy, and money spent on this work also impact this person’s life, and to minimize that by assuming they no longer face challenges doesn’t do justice to everything they are going through. If they run out of funds or energy to keep up this hard work, and thus slip back into a period of worsening disability, it is not their “fault” for letting it happen.

4. Ableism can also wear many faces

Some disabilities come with grief, discomfort, and limitation. For others, the disability itself is not so bad! In fact, living with disabilities can bring us wonderful communities, increased empathy and critical thinking, resilience, and a deep understanding of our bodies and minds. We can thrive, without feeling held back, in environments that are accessible. When our needs are met and we aren’t confronted with stigma, we can reach our full potential. In many cases, it’s not disability but rather ableism that makes life difficult. 

Just as disabilities can come in many forms, so does the ableism we face. It can be systemic, such as fighting through red tape to get the rights and benefits you qualify for under the Americans with Disabilities Act (ADA). It can be fighting to make your disabilities recognized as valid to friends, coworkers, and even doctors who may have been taught to assume that it is all in your head. Or, it may be in small moments when you make an assumption about someone based on their disability or shy away from someone because their difference makes you uncomfortable.

Like any form of implicit bias, we all – including disabled folks – carry these problematic assumptions. There is no need to feel ashamed of this, as shame is rarely a productive emotion. It is important, however, that we watch for our own ableism and work to unlearn these beliefs and reactions. Happy Disability Pride month to all, regardless of (in)visibility! Share your disability story with us in our Friends in the Fight Facebook group, or tag us on Instagram, Facebook, or Twitter.