If you read my post about the THRIVE program and my attendance at its Capstone Event in Boston, you’re going to love this one written by the true magic maker of the event. Sandy Ho is the Program Coordinator at Thrive, a mentoring program based at Easter Seals Massachusetts that matches transitional-age women from ages 16 to 24 who have disabilities with an older woman in their community who also has a disability. Sandy wrote a post about Thrive on her blog Perfectly Imperfecta, and I liked it so much that I immediately asked her to write a guest post for us here at Easter Seals.

Calling my own shots

by Sandy Ho

Here’s something you need to know about me: I am a young woman with a disability. Throughout the process of coordinating the Thrive Mentoring Program and the conference, I was routinely faced with acknowledging how much growing I still have to do. The capstone conference was held over a two-day weekend, and I had the privilege of spending it with 16 other women, 12 of whom were members of the mentoring program to empower transitional age young women with a disability.

At the start of the conference I asked each attendee to finish this sentence using one word: “An empowered woman is…” We did the same activity at the end of the conference, and what was so powerful about this is that each woman was able to fill in the blank for herself, and for her own reasons.

What did we do in between? Well let’s not forget the ten guest speakers we invited too!

• Our adaptive yoga instructor showed me that being a young woman with a disability involves being okay with who you are right at this moment. Whatever your body can or cannot do doesn’t matter, because when we are mentally in-tune with our breath, there is an attention to being connected with our limbs. I might have avoided even trying this before.
• From the author who read from her memoir, I was relieved to find out there is someone else who knows what it’s like to be raised by a mom who wanted to “correct” those “weird” physical habits that come with having a disability.
• Presenters on overcoming ableism made me realize that being a young woman with a disability means I need to be more attentive to the society I live in and to the structures that are in place.

This is a community of incredibly strong willed women! They’ve taught me that there is no square box that we were each meant to fit in, and maybe the whole point of being an empowered young woman with a disability is that I am resourceful, opinionated, strong, and wise enough to call my own shots and do whatever I wish to do. The Thrive program and the capstone conference has shown me I don’t need anyone’s permission to try.

Easter Seals has been supporting mentorship programs for many years, and in 2012 we helped launch a mentorship program focused on young women with disabilities. The program is called Thrive, and the offline program is based at Easter Seals Massachusetts. We’ve just expanded nationally online at Easterseals.com/thrive so anyone can join in!

Last year Thrive’s program coordinator Sandy Ho helped launch a Letters to Thrive blog encouraging women with disabilities to write letters to their younger selves. I follow the Letters to Thrive blog, and I found Sandy’s letter so compelling that I wanted to share it with you Easter Seals blog readers.

12 June 2013

You’ve just begun college, and I gotta admit that you are already a different person than you were just a few months ago. But right now I am writing to you five years later from the future, and there is even more that will surprise you about yourself even though right now sitting in your dorm room you feel like you’ve got everything all figured out.

The truth is that you don’t have it all figured out. And I know that that scares you to admit. It scares you because it makes you feel alone and isolated, because you are holding onto some secret mystery that you think only you have to hold onto for dear life. Right now you don’t even know what that secret mystery is, it’s just a presence inside of you that you’ve become used to until the day you begin to give it a name and let others in on it too. Over time the secret doesn’t really become heavier or any lighter on your shoulders, it just becomes less of an elephant inside of you and more of a light.

Spoiler alert: You aren’t afraid to try even though up until now you haven’t experienced failures that will leave you in your bed for days, crying and refusing to talk to anyone. You aren’t afraid to jump into things and become involved even though those decisions may make you completely re-think the person you are, and what you’re capable of. But most of all you are unafraid to reach out to others and help, even though you will learn in that process parts of yourself you were too embarrassed to admit, and quite frankly felt like you didn’t know the words to explain what you wanted and why.

I will say that five years later none of those things have stopped being true. At least now you know what that secret mystery inside of you is. You know that it hasn’t really stopped being a mystery, maybe less of a secret because you have found so many others to share it with. But there are still some parts of it that are unknown, and I am so grateful to have discovered other disabled women whose experiences and willingness to come together allow the questions from yesterday and today to ignite your passions for tomorrow.

Love always,
Your future self

Sandy’s is just one of many letters that have been submitted to Letters to Thrive on Tumblr. Some are empowering, some are resourceful, some give advice, and some are empathetic. Letter-writers brag, vent and celebrate. one thing they all have in common? They’re all honest.

The Letters to Thrive is creating a community out of shared life experiences, and they’re looking to grow. If you are a woman with a disability, please consider writing a letter to your younger self and submitting it to Letters to Thrive. I’m working on a letter myself and will be sharing it with both the Letters to Thrive blog on Tumblr and here on the Easter Seals blog as well. Stay tuned!

As promised in my previous post last Wednesday, I submitted a letter this week to the Letters to Thrive blog. The site is easy to access, and it even has a What Should I Write About? link for those with writer’s block. Writing my letter was a bittersweet experience – I felt sad for my younger self while simultaneously feeling hopeful for the future. Here’s an excerpt:

13 November 2014

Dear Younger Self,
The blip on your popularity chart peaked off the screen last week when you returned to high school — the other kids think it’s cool to know someone who was in the hospital and was almost in a coma.
Right now The two shots you take each day are long-acting insulins, far too slow and weak to handle the carbohydrates in the popcorn you like to snack on, the ten-cent rice dish you buy to save money in the high school cafeteria at lunch and the ice cream you cheat with from time to time.
This was your third hospital visit during your high school years, and before you were released this time, your doctor declared you won’t live to see your 30th birthday. What you and your doctor don’t know right now is that later on in your life, people with Type 1 diabetes will be able to test their blood glucose levels at home throughout the day. They’ll use an insulin pump or take a shot of fast-acting insulin to counteract the sugar and carbohydrates in all sorts of foods. You’ll be able to be more spontaneous, you won’t have to plan every meal, and you won’t have to feel guilty when you snack.
What your doctor could have told you as you left the hospital this time was to keep taking care of yourself the best you can — that way you’ll live to enjoy these breakthroughs.

I hope this excerpt intrigues you enough to read the entire letter at Letters to Thrive. Once you’re there, please consider writing and submitting a letter of your own – our letters help Thrive create a community from shared life experiences.

Erin Hawley talks fashion.

When I was a little girl, I wanted to be a fashion designer. I’d draw the kind of dresses and chic ensembles that I wanted to wear — outfits that I would probably never see in stores for people like me. Finding accessible styles that worked with my body shape and wheelchair use was always a problem.

As an adult, I still have trouble finding age-appropriate clothing that fit my small frame and appeal to my personal style. I’m 32 years old, and I don’t want to wear Elsa and Anna t-shirts (even though I love Frozen).

While I never realized my dream of fashion design (my professional interests lead me elsewhere), I still hold on to that desire of making clothes that work for me. And not just for me, but for thousands of other people with disabilities who have trouble accessing fashion. A recent New York Times article examines some positive trends in the design world. The article explains how designers are only recently taking notice of the need for accessible, stylish fashion for people with disabilities. An excerpt:

Solving for the disabled and the displaced has in many ways been the final frontier.
Though advances in medical technology and legislation have created situations in which people with long-term conditions are increasingly able to be part of the work force and quotidian life, the implications — they need clothes that allow them to do so while also accommodating their physical reality — have taken a while to sink in.

Modified clothing has been out there for some time, but the styles are usually expensive, hideous, in limited production, or a combination of all three. It’s hard to find items with magnetic snaps, comfortable seams, elastic waists, or sensory-friendly wear.

Folks with disabilities and their loved ones are sometimes forced to come up with fashion hacks to make styles work for them. But those work-arounds expose ways big-name designers can make their designs for a broader audience. I believe it is important for us to showcase those adaptations, and for designers to reach out into the disability community for ideas.

What we need are commercial styles that appeal to a wide-range of personal clothing preferences; this desire was highlighted during Easterseals Thrive’s disability and fashion chat on July 20.

Our discussion that day on what it means to be a fashionista in a society that doesn’t always consider the accessibility of style was eye-opening and clear in its overall theme — people with disabilities want to look and feel good in what we wear and how we express ourselves. We should have the ability to share our personalities with the public in what we put on our bodies, but right now, we are limited in our choices.

What I took away from that New York Times article is the way industry is slowly including accessibility seamlessly into their work. Designers should consider disability not as an afterthought, but as an integral part of their design process; I made the same case in my Pokemon GO blog post last month about accessible technology.

While certain stores or designers understand this need, there is still a long way to go before we see accessible styles in every mannequin display. I hope one day fashion will truly be for everyone.

Erin Hawley

After reading Ellen’s post on the Love That Max blog about her son Max’s declaration that he does not have “special needs,” I thought about my journey with identification and how it changed over the years.

Growing up in the 80s and early 90s, I never even considered myself disabled. I knew I was different, but to me, disability was something those other kids on TV had – the kids on telethons wishing for another body or being isolated from friends and family. That wasn’t me at all. My family loved, accepted, and cared for me. I had a large circle of friends at school that I hung out with regularly, and they treated me as an equal peer. At the time, I didn’t realize the privileges that led to live that sort of life. So I disregarded any attempt to categorize me as something I only associated with pity and sadness.

Media skewed my view of disability, and those stereotypes were difficult to unlearn. In high school, I began to see that disability is not about shame. Through talking with other crips (a term we have reclaimed), and being involved in the disability community thanks to the internet, I now envision disability as something powerful. No longer do I skirt the term “disabled,” but I wear it proudly like a badge of honor. When I have bad days that test my resolve, that threaten to dislocate me from the comfort of my own skin, I turn again to my fellow disabled friends and partner for support. We hold each other up — not always perfectly, but enough to keep going. We see this support and proud declaration of disability across the United States now, in protests against Medicaid cuts. Crips are spectacular and beautiful and prevailing.

Like Max, I think the term “special needs” doesn’t fit us. Kudos to Ellen for recognizing her son’s wishes, and respecting his desire to avoid that term. I’m in my mid-thirties, so I’ve come a long way since elementary school or middle school, where that term was used frequently. When I think of disabled people, the community Max and I both belong to, I don’t see our needs as special. They are normal, the same as abled people’s needs. We all have to eat, sleep, toilet, have social lives, and receive healthcare. Disabled people may go about these things in unique ways, but the core need is all the same; the difference is that the government or other systems routinely exclude us and cut services we desperately need. So we keep fighting.

It took me a while to accept my definition of disabled. It took me a while to understand why “special needs” and “person with a disability” bothered me. Max is also exploring these terms, figuring out how to define himself, and I think that’s a great thing to do. It’s also difficult, and I imagine his feelings will change as time goes on — just like it has for me. I accept that my opinion on terminology will evolve again; the learning and growing process does not end, nor should it. But, regardless of what I choose, I will always be proud to be me.

Join Easterseals National and Easterseals Thrive on July 20th at 7pm EST for a live Twitter chat on disability pride! Learn more at our website.