Wednesday, January 28, 2015

"Life with Cerebral Palsy" with Stephanie Cox: New Things!

Happy 2015 from Steph (and Chip) and Dara!

This month it was hard to decide what we wanted to talk about. We've been going with "themes" each month to correspond with whatever holiday is featured in that month but this month's holiday happened right in the middle of the most "busy" time for all of us. So, it's taken us a while to get our collective buns in gear and get this one done. (Main slacker award this month definitely goes to Dara!)

So, do we do a theme of "new" or "resolutions"? I (Dara) couldn't come up with questions along those lines. But one thing that's going on right now that's definitely "new" is the new wheelchair that Steph will be getting thanks to something else "new."

In December we used "" to receive donations and raised enough money to replace Steph's 17 year-old chair with a new one!

So, since the coolest "new" thing in 2015 is the new chair and the way it was funded (by the love of friends and family), let's stick to that topic this month. Let's talk about "adaptive equipment."

Adaptive equipment are devices that are used to assist with completing activities of daily living. Bathing, dressing, grooming, toileting, and feeding are self-care activities that are including in the spectrum of activities of daily living for people with disabilities. Examples of adaptive equipment or assistive technology are wheelchairs, lifts, standing frames, gait trainers, augmentative communication devices, bath chairs, and recreational items such as swings or tricycles.

So Steph...

1. What types of adaptive equipment do you use?
I use wheelchairs, a toilet chair, a bath chair, and an augmentation communication device. I used a DynaVox for years, but now I have an app on my iPad that I use as a speech device.

2. What is your favorite piece of equipment that you have? What is it about that piece of equipment that you like the most? Is there one that you would say is fun?
My new wheelchair will be my favorite chair EVER because the kindness and generosity of so many allowed me to get it. I can't wait to finally get it. I will love it!! Thank you again to everyone who so generously contributed to the fund! It means more to me than you will ever know!!!

3. Are their any pieces of equipment that you really can't stand or dislike?

My toilet chair because it smells like poop! Kidding, kidding! LOL! Seriously no, my equipment is necessary for me to live as "normal" as possible. To me, it's like furniture. I do hate my old wheelchair right now because knowing I'm getting a new chair makes it even more uncomfortable when I must use it. It hurts if I sit in it too long. I'm soooo ready for my new chair!

4. When choosing equipment do you get to choose colors and other features that make those items more personal?

Most wheelchairs allow people to choose colors. They are very customizable because different people need different supports. Since I can't sit up by myself, I need a very customized seat that is created by having me sit in moldable material from which the seat will be made. Toilet chairs and bath chairs are not as custom. People choose which ones they need.

(Above) All of the colors my new wheelchair comes in. 
I chose mauve pink with purple seat covers for my new chair. 

5. How much do the types of adaptive equipment that you need usually cost?

Hundreds to thousands of dollars. Everything for people with disabilities is super expensive. This is a major pet peeve of mine. 

(Below) Here are screenshots of toilet and bath chairs that I use with prices. (It, of course, varies but these give an idea of the horrid prices for people with severe disabilities.)

6. How often do you get new equipment?

When they become so worn out that we have no choice but to get new. You should see how we make due with what we have. This is why it means so much that you, my BFF, Dara, set up the Go Fund Me campaign for my new wheelchair so we can get one or I'd keep making due with the one I've had for 18 years until it was totally unusable. Thank you again, Dara!!

(Above) My 18-year-old chair that is about to be replaced by a new one funded by the kindness of people.

7. Does the government help pay for adaptive equipment in any way?

There are programs that do -- both government and non-profit -- but it is very difficult to qualify. I remember my parents always fighting to get my new equipment every time I needed something new. I guess only certain people qualify. Even though I'm very far from being rich, I just never meet the requirements. It's not fair and is extremely frustrating. It shouldn't be this way. I also believe the Church should be doing more to help in this area as well. God calls us to help those in need yet even many Christian organizations reject our cries for help--both as a child and adult.

8. So, you get any government assistance at all?

I did before I got married but then, even though we are far from rich, I no longer qualified soon after we were married. They won't even pay my husband to care for me. He can't leave me to work and finding reliable help to care for me while he is away is quite difficult. The government expects you to be absolutely poor before they'll help. Then the process of applying for help is very degrading. Even medical insurance is still hard to get that will help with this stuff. It is truly screwed up!

9. People tend to look at "disabled" people as people who need to BE cared for and that they are the people who are on the receiving end of life. But when you look at the world you live in do you see yourself as a "receiver" or as a "contributor?" And, in what ways do you desire to contribute?

I see myself as a contributor. I want to keep helping children and families. That's why I spent most of my life in school earning my Bachelor and Master Degrees in Early Childhood Education. That's why I spent three years researching and writing my book, Gentle Firmness, with my nose. That's why I'm writing more books as well as looking for a job as either a online college early childhood education instructor, a parent educator, or writing for a newspaper or magazine about children. I have so much to offer despite my severe physical disability. Finding someone who sees this is so hard and discouraging.

10. Having that desire to be a contributor, what is it like finding employment when you have a physical disability? Do employers have attitudes about people with disabilities that make you uncomfortable when approaching an interview?

Another "fun" thing about being severely disabled is most typical people turn 16 and go get a job & have the experience of learning how to find & get jobs throughout their lives. They keep their resume updated. They learn the ins & outs of job hunting.

I've only had 2 job interviews my whole life. This feels very scary & overwhelming like finding a publisher was. So, I need to keep asking & looking. There's gotta be a job that'll fit me out there.

Employers can be very leery of hiring people with disabilities. They worry what accommodations and even insurance they must provide if they hire the person. I also feel like many people have a lot of false assumptions about me. It's hard. But I had a great job as an infant teacher, so I'm sure I will eventually find another job.

11. If you had the option of receiving an hourly wage from the gov't to stay home because you're disabled, or that same amount of money to work...which would you choose and why?

I want to work because that's what I feel God wants me to do. As I said, I have so much to offer. God is and will use me to do His Will. It'd be an absolute disgrace for me to live off the government. Plus, I'd go insane not helping children and families.

Part of living a "normal" as possible life is being a productive citizen. I am totally able to be a productive citizen. I just require help to do so. Yes, I think the government and Church should help when needed. But no one should simply live off the government.

12. In what ways do you feel the average work place could adapt itself to be more accommodating to people like yourself who have the mind and heart to work and contribute to your world but need adaptive equipment to do so?

An open mind and willingness to be a bit flexible because I need extra time to eat and go to the bathroom. I also require someone to always be with me to help me.

How long did it take to answer all these questions?

It took me two hours to answer these questions.

- - -


Introduction to the series

Interview 1: "The Chair"
Posted Sept. 1, 2014 Steph answers questions about what life has been like for her using a wheelchair to get around.

Interview 2: "Back to School"
Posted Sept. 29, 2014 Steph describes some of the challenges about what life was like as a person with cerebral palsy going thru the public school system...all the way to getting her Master's degree.

Interview 3: "Halloween"
Posted Oct. 38, 2014 Steph tells us about her experiences with the American holiday of "Halloween" growing up.

Interview 4 "The Holidays"

Posted Nov.24, 2014 Steph talks about what the holiday season means to her.

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