jane hash, osteogenesis imperfecta

“Hashing It Out” with Jane Hash: An Activist With Osteogenesis Imperfecta

Posted In: All | Katherine's Friends

Today on Looking Up, I’d like to introduce you to a TRUE entrepreneur, Jane Hash, who just so happens to have Osteogenesis Imperfecta Type III like me. An activist, business owner, volunteer, podcaster, nutritionist, and blogger herself, Jane has truly done it all.

Let’s get started!

Hey Jane! First, I want to start off with what exactly you DO…or maybe what you DON’T DO would be the shorter list! When someone asks you what you “do,” how do you answer them?

Thank you for asking that question because it’s something I’ve been struggling to define lately. My conclusion thus far is that I’m an Activist. In being an Activist, I play many roles, which include healthcare advocate, disability rights advocate, natural health advocate, speaker, blogger, fashionista, entertainer…whatever it takes to get the job done.

I met you through the OI Facebook groups a few years back. We found that we have similar experiences with natural medicine and nutrition. Could you tell me a little bit about how your knowledge of natural medicine has changed your life as an OI-er?

Oh ya! My health has improved immensely since I learned about the role diet plays in our overall wellbeing and how to make and use natural remedies. Many years ago I was very overweight and dependent on asthma medication, which caused awful side effects. So, I replaced alcohol and soda with water and herbal teas. I replaced white bread and pastas with whole grain (sometimes gluten-free) alternatives. I avoided dairy completely for a few years. After taking these few steps, I lost 10 pounds. That’s a big deal when you’re talking about a body that’s only 31 inches tall! I continued to make changes and lost 7 more pounds, and I’ve kept all that excess weight off for more than a decade. My body temperature seems to have regulated too because I don’t get those obnoxious OI sweats anymore.

I remember meeting you and realizing that you were significantly older than I was, and I was totally shocked. Not just because you certainly don’t look your age, but also because I grew up believing that I would be pretty much as good as dead by 40. Obviously that may not be the case! Did you have a similar upbringing? What was your prognosis as a child?

The first time a doctor said I was going to die, I was a few hours old. The last time a doctor told me I was going to die was about seven months ago. In between those two occasions there were plenty more. I’ve even experienced a few situations that left me surprised that I’m still alive! Obviously, I have yet to fulfill my purpose in this life because I’m certainly not dead. I attribute my excellent health and youthful appearance to the use of holistic health modalities and my rejection of current OI treatments. As an open-minded Certified Natural Health Professional, I believe there is a time and place for every type of medicine. There is no cup of tea I can brew that would reattach a severed limb. For that, a surgeon is required. However, I also believe that the use of invasive surgeries and pharmaceutical drugs are out of control. When I reach senior citizen status I may change my mind about partaking in traditional OI treatments but as long as my body keeps responding favorably to the naturopathic lifestyle I lead, I’m going to keep doing what works. Also, it is very fulfilling that I can be a role model to the next generation of OIers because I remember how scary and sad it was to not have anyone like me to learn from.

I follow you on Facebook, and I see that you do a ton of activism. Can you tell me a little bit about that? What are you up to these days?

Right now, healthcare advocacy occupies most of my time. Consumer engagement is my area of specialty. What all that means is that I communicate with healthcare consumers, disabled and non-disabled, and listen to their stories of how they are getting (or not getting) their healthcare needs met. Then I write a narrative about each person, their situation, their struggles and successes in receiving healthcare. These narratives are then handed over to state and national healthcare advocacy organizations so they can see what is and what is not working with our healthcare system. It is quite a learning experience. Also, I’m actively involved in the medical marijuana movement because I believe it is a safe and effective medicine for many.

As you and I both know, finding age-appropriate clothes for people of our stature is next to impossible. You and a couple friends solved this problem by founding Classy Little Fashions Foundation, for which I designed the branding. Can you tell me what started this idea and how the foundation has developed over the last year or so?

I ranted on social media more than once about this fashion disparity. It is very frustrating to be educated, motivated, and able to pursue a profession but you can’t because you don’t have anything appropriate to wear. Fortunately, one day Carol E. Briney responded to once of my rants. She wanted to help and she has the skills to match her passion. So, we had one meeting, looked over all my clothes, and I gave her the ‘Welcome to OI 101.’ We realized that this fashion issue goes way beyond me and we wanted to do something to help others dealing with the situation I was in. That’s when we founded the non-profit organization, Classy Little Fashions Foundation. We have some exciting things happening in our Research and Development department right now but it’s too soon to talk about it publicly. What I can say though is that ever since I have had the option to express my true self through fashion, I have opportunities opening up like I never imagined. It is life changing.

I have to ask, what’s with the mermaid stuff?

I’m still trying to wrap my brain around that myself! It started two years ago when Mat Fraser invited me to be part of his entourage that was ‘marching’ in the Coney Island Mermaid Parade. I calmly and graciously accepted his invitation. Then I frantically called my fashion partner Carol and screeched something like, “I HAVE TO BE THE BEST SEXY MERMAID EVER! DO SOMETHING WITH ME!” At first I know how this can sound silly and trivial but it’s actually huge. The Mermaid Parade is the largest art parade in the country and is attended by thousands of people from every walk/roll of life. It is the epitome of diversity. Mat Fraser is a successful actor and musician with a physical impairment whose accomplishments challenge society and the media in ways that are necessary for the advancement of people with disabilities in the entertainment industry. Therefore, this invitation was an opportunity to represent women with physical disabilities in a fun, artsy, and sexy way. I did not anticipate the magic of the beautiful Mermaid tail that Carol made for me. Being a Mermaid has become another way I’m an activist. Since my Mermaid debut two years ago, I’ve had some really fun Mermaid gigs and performed with some of the best within the sideshow circuit.

Like me, you LOVE animals. Please tell us a little bit about Bob and what it’s like having a cat that’s as big as you!

I’m really glad you asked about Bob! Having a cat that’s nearly the same size as me is surreal and awesome. When we lie next to each other and fully extend both of our bodies, he is longer than me. He is a Savannah Cat, which means he’s part African Serval. Sadly, these kitties have a bad reputation that is based on pure ignorance and misinformation. Like all Savannah Cats, Bob has social needs that regular cat’s don’t. When these social needs are not met, these highly intelligent cats can be destructive because they get bored. Bob is very well behaved though and has never done anything destructive. I think the combination of me working mostly from home and caregivers and friends visiting daily, gives him the social stimulation he needs to be a happy boy. He’s also super gentle with me. He learned on his own to be careful when playing and snuggling me. When he plays with is ‘Dad’…that’s another story. They play rough but Bob is still much more of a lover than a fighter. While all this is true, he is also a beast! When he gets mad at me, he will bop me on top of my head with his paw-fist! He will also get into my makeup when I’m putting it on unless I do his makeup too…he has his own brush.

What is the funniest thing a stranger has ever said/done to you because of your “condition?”

Oh my, that is a hard one to narrow down. I’d have to say the funniest question anyone has ever asked me regarding my disability was asked by a guy who was awkwardly trying to hit on me. He asked, “So…are you like…anatomically the same down there?”

Is there anything else you’d like readers to know about you or OI that we haven’t covered yet? Anything they can do to help in your activist quests?

Jane Fun Fact: I did not know that my right hip joint is completely unattached until I was in my late 30’s. I was always curious how/why I was able to perform certain…bedroom acrobatics. Then I was in an auto accident and had several x-rays taken of my mid-section. At first the doctor thought the impact of the accident did it but then we realized…nope. It was never attached to begin with! I’m really glad nobody took the initiative to ‘fix it’ when I was younger because that would have had a negative impact on my mobility between the sheets.

The best way to support my activism is to subscribe to my “Jane’s Hashtag E-Newsletter.” To subscribe, send me a message on social media with your preferred email address.

Thank you so much for your time! Everyone go follow Jane here on Facebook, Instagram, and Twitter!

Photo Credit: Alternative Noise Productions (Jane’s ensemble was provided by Classy Little Fashions)

  • Angela hill
    June 11, 2017

    I loved this interview . One great woman talking to another great woman ..
    Such honesty …I learned a lot .

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