How To Be Empowered Whilst Disabled: Our Stories of Hope and Invincibility (A Collaboration Between InvincibleWomanOnWheels and The Hope Chronicles)

I’m delighted to have the lovely Hope of The Hope Chronicles collaborating with me on this blog. We both thought we’d give you a little insight into us and our blogs, so there’s a little Frequently Asked Questions section for both of us and a little more of what we want to achieve with our blogs. Enjoy!

Emma (InvincibleWomanOnWheels)

Name: Emma, Em, Ems, The Invincible Woman On Wheels

Age: 23

Condition: Cerebral Palsy Spastic Diplegia

Location: Chippenham/Birmingham – based in Birmingham for University

What’s the reason/message behind the blog?

To give a realistic view of life with a disability. Disability isn’t all pity and sadness, but let’s be real, it’s not all sunshine and rainbows either.

 What is the story behind the blog name and social media handles?

The idea essentially began on the Sicily trip which is the first post on here. My travelling companions and I managed to work around and overcome many challenges that we faced on this trip (both accessibility-based and otherwise). This led to us calling ourselves the Invincible Women throughout the trip and beyond. Whilst on that trip those friends encouraged me to start this blog. When thinking of a blog name, it only felt right to take inspiration from the trio on that trip as a sort of homage to where it all started. That is Invincible Woman On Wheels as you know it.

Any advice for other disabled bloggers?

I think my biggest slice of advice would be to write about what you know from the viewpoint of your condition. By that I mean write about your experiences and don’t try and write about a topic if you don’t think you have the right knowledge, if you think you should be writing about it, or if it’s the “trendy” topic. I’d rather see “I don’t know about X” in a blog post than someone who’s trying to pool research without any first-hand experience. My other advice is to be honest, particularly if you’re writing access reviews like I do. Venues may not like it too much if a review paints them in a negative light, but if you’re trying to give good access information to fellow disabled people, an honest, accurate review is better than a sweet one.

What’s the oddest thing you’ve ever been asked?
Someone I’d barely spoken to once asked me “So how do you have sex?” and I JUST DON’T ASK THAT. There are 3 questions/comments here: a. Would you ask an able-bodied person that?!; b. Why does that question even enter your head as the first one to ask me?!; and c. That’s literally not anyone’s business unless we’re dating.

What does your disability mean for your life and what is the hardest part of it?

The biggest impact of my disability is that I cannot walk and am a wheelchair user. Some of the probably less obvious issues are things like fine motor control issues which can making using scissors and other actions that need small precise motions more difficult. I think the hardest part about my disability isn’t actually the condition, but more realising that society isn’t made to accommodate me or consider the fact I exist at all. I mean that both in terms of physical inaccessibility and in terms of social protocol Every system is more difficult to navigate when you’re disabled.

What does a typical day look like for you?

This depends a fair bit on whether I’m at university or at home, so I’ll keep it vaguer instead of being too specific to either setting. I’ll start with breakfast and my all-important coffee around 8am. Then, during the daytime, I’ll deal with what I refer to as “life stuff,” i.e. the stuff to do with being an adult and not related to my blogging side hustle. As a rule, that meant preparing for and attending the lectures and seminars for my master’s  degree and planning or completing assignments. However, more recently during the pandemic, (in lockdown and with no university lectures) it’s meant working on my application for a PhD, job hunting, and house hunting. Once I’ve done some of that stuff, I’ll have some dinner before moving onto blogging tasks (i.e. planning, writing, and promoting blog posts). My evenings, if I allow myself a proper evening, consist of watching MMA (Mixed Martial Arts) or a TV series if there is an interesting one shown that evening.

What interests you when you aren’t managing your disability?

I’m the biggest lover of music and specifically live concerts. I also love watching MMA, either on the TV or live in person. I even have a section on my blog about travelling to MMA shows and another on my favourite MMA promotion Cage Warriors.

Do you have any desire to write beyond the blog? If so, what, where or how? 

I’d like to do a little more activism through my writing and be part of wider society, developing more understanding of what true life with a disability is as opposed to the depictions we see on TV and in films. I think the best way to do that kind of work is writing experiential pieces about various aspects of life with a disability for  magazines and/or news outlets, maybe like the interview I did with The Guardian on what it’s like to attend university as a disabled student. With that being said, I do have a contact page if any magazines or news outlets do want to get in contact about articles or interviews from me on various aspects of life with a disability.

Now over to Hope to tell you a little bit about herself!

Hope (The Hope Chronicles)

Name: Hope, Hope Osborn, Y. Hope Osborn

Age: 43

Condition:  Combo–Severe, Recurrent, Major Depressive Disorder, Complex-PTSD, general anxiety, Osteoporosis that has caused me to break or fracture bones for 6 years in a row now, with my 5th surgery  June of this year, Endometriosis, Hypothyroidism, Fibromyalgia, Mild Carpal Tunnel, herniated disc C6C7

Location: Little Rock, Arkansas, USA

What’s the reason/message behind the blog?

To raise awareness of child abuse, trauma, mental illness, social justice. Also, though I am aware of these things, I hope to remind people that there is beauty, victory, and freedom amid hardship, such as in my photography art.

What is the story behind the blog name and social media handles?

I started the blog back in 2012 before I had to stop working a regular job, before now earning my MA in Professional and Technical Writing in December, before building a photography and writing freelance business was in mind, and before I was as open as I am now about my trauma, so it started out on a variety of different topics than I now cover. It still stands that The Hope Chronicles is predominantly about just living life in general and the various encounters of my life that I want people to find hope in.

My social media handle of YHopeOsborn is about creating space in the world for my writing and photography and building a freelance business in those realms in order to be productive while working around health appointments, surgeries, treatments, etc.

https://twitter.com/YHopeOsborn

https://www.facebook.com/YHopeOsbornMedia

http://LinkedIn.com/in/yhopeosborn

https://medium.com/@YHopeOsborn

https://www.artworkarchive.com/profile/yhopeosborn

https://www.saatchiart.com/yhopeosborn

Any advice for other disabled bloggers?

I have to agree with The Invincible Woman on Wheels or Em in writing about what you know and reviewing for generative feedback, meaning that which enables the writer to be a better writer.

As she said, just because you have a disability, it doesn’t mean it has to enter into the picture of your blog. One thing I try to do in my life is give myself avenues for getting away from my disability as much as possible, such as my photography art, gardening, and pets, Isobel, the kitten, and pair a parakeets, Widget and Whimsy. I just  work at making each easier in some way so that I don’t feel confined by disability. I enjoy the bounty of color and creation my garden provides year around, the purr and cuddle of my kitten, the happy chirping and talking with my parakeets, and finding great photo Captures.

Also, don’t ever be ashamed of being disabled. I must remind myself of this, particularly during the frequent times in surgery and in boots and crutches or walker (even wheelchair for 6 weeks a couple years back). I don’t appear to others as if I am disabled enough to not work a regular job. I feel like I need to explain myself, and I don’t. You don’t, whatever your situation in life. It is your own experience. You know the truth of it for yourself.

What’s the oddest thing you’ve ever been asked?

When I was at my last job and I started sleeping in the morning without waking to multiple alarms and calls by friends and anything else I could think of, I was sincerely apologetic and ashamed of being late for work, though I always made up the time some way. In those few months of that I worked with doctors, including a sleep study, trying to figure out what was going on.

As I was trying to explain to my employers all this with regular updates, they totally ignored any reference to it being a health problem, and one of the times I was late, I was called into the office manager’s office where she proceeded to say, “You know if you would just call and tell us you were going to be late, we’d understand.” Maybe not the oddest. Maybe unanswerable as a stupid statement, but I still responded, “If I could call you to tell you I’d be late, I would be awake and wouldn’t have to call to tell you I was going to be late, because I’d be here.” I was fired for those ongoing offenses caused by my health and a month later the problem cleared up without explanation or any more treatment than I already received.

However, I think it was God’s way of getting me out of what turned out to be a bad work environment and out of general work, because I would have been too afraid to let go of even a crappy job to spend my time focusing more on my degree, writing, photography, and health.

Which of your conditions do you consider the most impactful on your day?

The most obvious that comes to mind is the yearly broken bones with surgeries along with surgeries outside of the osteoporosis, but the answer is much more subtle even to me. The Depression and Complex-PTSD or just the traumatic childhood explains not only my constant stress and self- and relationship- destructive behavioral actions and mental thinking, but, according to studies, child abuse survivors suffer more physical ailments. A lot of my health problems are genetic, but I don’t see these in the family, or they are just odd for my age or situation, such as the osteoporosis without cause, and probably are a result of childhood trauma, and adult trauma for that matter. If you count all that together that covers most of my problems and I would say the Complex-PTSD is the condition. I battle the flashbacks, dreams, disassociation of it and trying to tame it through counselling, treatments, and psychiatric drugs, alongside all my health-related meds every day.

The fact is that all through my developmental stages of life I was traumatized in multiple ways, so bad neural pathways were laid down and good ones were short-circuited. I’ll be years in therapy working on cleaning up that mess, particularly since I have only in the last few years had a really good counsellor and psychiatrist.

What does a typical day look like for you?

A typical day is that it isn’t ever typical. My alarm is set to wake me at 5:30, so I can get up long enough to care for my cat and take my morning pills. Then, if all goes well, I lie back down and sleep for another hour or hour and a half, waking naturally and not feeling the yuck of what sits with me from night. I spend an hour or so “catching up on the phone,” I call it, because I am on my phone, responding to or sending emails or texts, working on social media, seeing how much REM or deep sleep I managed that night to explain whatever state I am in and watching for problems that tell me how well the ketamine treatments for my depression are going and to explain whatever state I wake in, updating all the apps that need attention, and calling doctors’ offices when necessary.

Then if I am not crippled with a fracture like now or down with and quarantined in flu-like illness (such as twice in a row during the pandemic) or something else doesn’t absolutely preclude it, I try to either spend 30 minutes doing a part of cleaning the place, exercising at the gym, or tending my year around patio garden. In and out of all this time I try to keep up a schedule well in advance of my current day because it helps motivate me to do the next thing, particularly on difficult health days.

If there is anything that is work intensive, like photo shoots (not often), writing, studying (such as for my MA, watching or doing workshops, or taking a library course), figuring out business or other writing or art possibilities,  working on finances, or Wednesday’s order of Kroger click list, for example, it has to be done in the morning or early afternoon during my peak energy and focus time.

The first half of my afternoon, I try to plan socializing, often with food, drink, or house prep and any kind of appointment or treatment, run errands, do chores. If I have a heavy day, I take about a 45-minute lunch break to heat up something quick from my once a week cooking or from the store and debrief by watching good clean comedians, because laughing is part of the ton of medications taken with lunch. Sundays also at that time I divide out all my pills to take 5:30am, noon, 5pm, 8pm, and 9:30 and set aside pill bottles I need to get refills by the end of the week for the following week.

By noon even now at a slower paced morning, I am already getting very tired. I need to lie down and not push myself because when I inevitably do, I create pain and sickness and exhaustion that affects the already difficult time of going to sleep by 10 even without going anywhere or communicating by any means after 6 though that is often when other people do things. I miss gatherings and special events all the time because I can’t push it or mess up my whole going to sleep process, which then dominoes into diminishing productivity or well-being the next day.

So by 2pm or 3pm, I recline on the sofa and work on photo processing; which I found I can do in my off time, though it is tiring and too easily captivating; and/or spending time with my cat and talking some more with my social parakeets. I also spend time arranging things or catching up via text or email or working on schedule-based events and communications of the day.

5pm I shut all the blinds and curtains, turn off most of the lights, take a shower, get in my pyjamas, unless I needed to in the morning, take medicine, care for the cat, and spend the rest of the evening until about 10pm bedtime. I sleep on the sofa using a quilt I made when I was a teenager to cocoon in because, since the bedroom was a problem with my father growing up, my bedroom is where I struggle most to sleep, have my “grey dreams,” have PTSD experiences and feelings, which in turn allows my head to go all sorts of negative ways just perpetuating the insomnia. Because I am so hard to sedate and because of medications I wake up at least once around midnight, needing a carb snack to fall back asleep. I hate that and other awakenings because it makes me feel yucky then and sometimes into the next day when ability is determined according to whim and how the previous day or that night went. Sometimes I must make myself take a sick day if I have had a really bad night or previous day.

There are always the limitations and intrusive problems and endless medical appointments, treatments, and surgeries and a good but hard counselling session once a week. I disassociate a lot. A lot of my disassociations I didn’t realize until thinking through issues or events with my therapist. Any getting up and down from the ground is painful enough to make it difficult to get up at all with right now yet another stress fracture in my left leg because I have osteoporosis for no medical reason that has caused me to have broken bones and surgeries for the 6th year running. Then every day there is pushing against the crowding health issues, trying to ignore them to have a life apart from health.

What interests you when you aren’t managing your disability?

I do enjoy listening to my playlists, Cur. Favs, Easy Groovin’, Jammin’ and Exercise Jam in the mornings to help push me along. The Cur Favs are anytime, and Easy Groovin’ is for company or afternoons. I love my year around garden, with the spring and fall planting allowing me my Disneyland experience of going to the garden center to partly fill an order I planned and partly figure out the palette from what is available that year. I used to read the last two hours of every day (I mean I read at least that much every day since I was a kid), but now not so much because for some reason I got bored of it, I think at least in part because I read through all the good mystery genre at least once. After all these years, I just lost interest, which is bad for me as a writer for by reading we grow our vocabulary, perspective, concepts, etc. I need to read the long list of nonfiction I gathered from my professors.

Additionally, I am a photographer artist. At least once a month except when I am laid up with surgery as just now, I go out on photo shoots looking for great Captures. I may go downtown and photograph historic buildings from all sorts of perspectives or go to a park with a view and photograph the landscape or take photographs from the flowers in my own garden. I process them like a painter adding depth to bring out a cornice or color to bring forward a whole building or a bump to add dimension to a flat floral photograph. I win awards in competitions and have shown in galleries here in Little Rock, Arkansas, in Portland, OR; and online at Fusion Art in an artist solo spotlight.

I work on getting my photographs and written works published with some small success so far. You can find my work here at artworkarchive.com/profile/yhopeosborn and can contact me directly yhosborn@gmail.com for any prints or canvases you may want. I have just set up sales on Saatchi Art.

Do you have any desire to write beyond the blog? If so what, where, or how?

I have considered writing my memoir, but I only have some stories and a partial manuscript. I write creative nonfiction and for school write rhetorical analyses among other things, such as writing code for websites in an upcoming class that is one of two classes that will finish out my MA in Professional and Technical Writing with a Creative Nonfiction emphasis, preparing me for grant writing, legal writing, whitepapers, research, and a variety of other areas and software to work alongside my photography as a freelance writer, editor, artist, and designer.

***

I hope you learned a little about us both

Stay Invincible! And live a life of Hope!

Em (Invincible Woman On Wheels)

Hope (The Hope Chronicles)

5 Comments

  1. Pingback: Silver Linings of 2020 | Invincible Woman on Wheels

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