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5 Things I Wish I Understood As A Disabled Youth

The recent death of American disability activist Judy Heumann and dedication of a memorial statue for Australian disabled comedian, advocate, and journalist Stella Young, have me thinking about the lifespans and unique learning experiences of people with disabilities, and what disabled adults would want to tell our younger selves if we could.

Both Heumann and Young were disabled women, pioneers of disability rights and culture, and role models for disabled people around the world. Stella Young’s death in 2014 was one of the first times in my life as a disabled person that I thought deeply about what I would say to my disabled teenage self. And Heumann’s passing in March 2023 raised those questions for me again.

Everyone has things they would like to say to their younger selves — mistakes they wish they could retroactively warn themselves about, plus fears and obsessions they had as youth that they know now haven’t turned out to be important in the long run. This can be doubly true, and twice as potentially impactful for people who were once disabled youth and have since grown into mature disabled adults.

For some time, the idea of “a letter to my younger self” has been an occasionally recurring theme in disability culture.

The first example I remember was in fact Stella Young’s 2013 article, "A letter to my younger self. In it, she explored the differences between what seemed important and worrying to her as a disabled youth, and what turned out to be her more difficult but still manageable challenges later in her life. Stella's letter focused a lot on love and relationships, because like so many significantly disabled teens, she both craved them and believed they might be impossible for her because of her disabilities – something which turned out not to be true for her at all. Young’s letter also focused on discovering more positive ways to embrace her disability – empowering ideas that came not from her otherwise supportive family, but from other disabled people.

A year later, I ran across a Tumblr collection of similar letters by disabled adults to their younger selves,: "Letters to Thrive: Letters by Women with Disabilities to their Younger Selves,” curated by disabled activist Sandy Ho. In one of the featured letters still available, "Dear 14 Year Old Isabella," the writer describes how something that later in life can seem like almost nothing can feel like a defining, defeating characteristic when you are young – such as a visible scar. As disabled youth, we sometimes worry about comparatively insignificant things, and ignore or even fail to notice what later are much more important and difficult challenges, as well as opportunities.

And in the 2020 letter "Disability and me: an open letter to my younger self," Raya Al-Jadir tells her younger self that she is proud of her. While as an adult she wishes that some things had been different, and that she could have had disabled mentors to talk to her of possibilities rather than obstacles, she is still happy with how her life has turned out, thanks partly to her strength and determination in youth.

While I myself haven't gone so far as to write a letter to my own teenage self, I do have thoughts as someone who grew up with disabilities and still have them, about what I might want to tell disabled youth today.

1. Connecting with other disabled people is a good idea.

It can be hard to believe when you feel so different and are so often treated as tragic, fragile, and one-dimensional but disabled people aren't depressing, boring, or embarrassing. Getting to know them and spending time with them won’t be upsetting or drag you down. If you feel otherwise, you may need to break through your own internalized ableism — the way you consciously or unconsciously buy into disability stereotypes and stigma. You can be socially integrated with non-disabled people, like a “regular person,” and connect with disabled peers too.

That’s a good thing, because disabled people can understand some of your experiences, dreams, and worries like no one else can, even your parents. Disabled adults can be uniquely valuable mentors and role models.

Look at it this way. Don't allow yourself to shun other disabled people the way it so often seems like non-disabled people shun you.

2. It's important to create your interests and plans as soon as possible.

There are probably lots of people mapping out agendas for you, even if you aren’t at all sure about what kind of life you want for yourself. While some disabled youth are terribly neglected, most in some way are fussed over and pulled in different directions by well-intentioned people who feel they know what’s best. This can include parents, teachers, doctors, therapists, counselors, and even random strangers.

It may seem like making your own future plans – for college, work, building a family, and the like – is less important because of all the others who seem to have a stake in your future. But it's actually moreimportant for disabled youth to plan ahead for adulthood than it is for young people who don't have disabilities – if only to make sure you have a say in your own future.

You will also probably be told to be realistic. That’s good advice, up to a point. Setting realistic goals is helpful, but it’s not necessarily essential. Don't limit your options too much or soon, just because you have disabilities. Go ahead and dream big, and then make realistic plans to get there.

3. Be more confident about some things.

Seriously question what you may assume you will never do because of your disability – like go to college, have a job, drive a car, live on your own, fall in love, get married. Especially take Stella Young’s message to her younger self seriously, and don't rule out love and relationships. Know that they are possible for you. But at the same time, don’t obsess over “getting” a boyfriend or girlfriend either.

Above all, start to imagine yourself as a contributor and participant in your community and the world, not just a passive observer and recipient of help. Think about giving as well as receiving friendship, love, and help to others. Get used to pitching in instead of just watching. At the same time, don’t feel bad about needing and asking for help. Do what you must to cope as effectively as possible with your disability, on your terms.

Believe in yourself. Learn to put yourself forward. Don’t wait to be asked.

4. Be a little less confident about other things.

Be proud of yourself and your accomplishments. But also be skeptical about certain kinds of non-specific over-praising that some adults feel compelled to shower on disabled youth. Whatever seems to be your best quality, which everyone praises, question it. Ask yourself, "Am I really that brave, talented, and inspiring — or am I just exceeding very low expectations?'

And don’t take what you have for granted. If your life seems fairly secure and safe, don't assume it always will be.

How you process this particular advice depends a lot on your personal, social, and economic situation. Some disabled youth desperately need more encouragement, acceptance, and financial security. But others really are too protected and coddled, treated like royalty. This can lead to some nasty shocks when you reach adulthood and have to deal with people other than your supportive parents, favorite teachers, and closest friends.

Remember that disability can make you in some ways more mature and resilient than others your age. But how others treat you as a disabled teen can give you distorted impressions about what your assets really are, and what it’s going to be like in everyday adult life.

5. Recognize ways you have privilege.

Being disabled exposes you to many kinds of barriers, prejudices. and discrimination. There are physical barriers like stairs. You may need help just to get out of bed, bathe, and dress every day. You may run into people who avoid you, or bully you. Despite legal protections like the Americans with Disabilities Act, you may lose employment opportunities because of your disability.

But other parts of your identity and background can also give you social privilege that may be hard for you to recognize because you're so used to them. This can include being White in a world where racism still has power, being male in a society where women are still at a disadvantage in many situations, being financially well where others have to struggle to pay rent, plan for the future, or even buy groceries.

It is entirely possible for a significantly disabled person to have more social capital than, for example, the caregivers, service providers, fellow students, and coworkers that are so often part of their everyday lives. Your place in society as a disabled person isn’t necessarily at the bottom or on the sidelines. And remember that how you treat others is as important as how they treat you. Empathy works in both directions and on many different levels. Being the only disabled person in the room doesn’t mean you are automatically the one with the least influence and standing, or the person who needs the most help and support.

It will be important when you meet new people and have to work with them, to understand that you are neither worse than them, nor better, just because of your disabilities.

Is this just a therapeutic exercise for adult disabled people? Or could advice and letters like these be of real use to disabled teens and young adults? Older people like to think that they have something to teach youth. But as teenagers, would we have listened if we had this advice? It may be impossible to know, but it's at least worth thinking about.

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