Being both physically disabled and Autistic, it is no small task discovering adaptive hobbies marking every one of the following categories: accessible, mainstream-available, mainstream-loved, and also a Special Interest. The least necessary are the ones having to do with the mainstream, but they are icing due to increased overall social enjoyment and my ability to access them. In the rare freaking coincidence this happens, the brain sirens are a-ringin’. I want to share my love for whatever it is with the world.
Read MoreWhen We Have Nowhere Left to Go...[Podcast]
Hello, Sparkly Society. It’s been a while since we have done a Disability News! Welcome back. If you’re reading this on our blog, yes, common sense has finally kicked in, and this is the accessibility Frill-Ability has needed. (It took me a while. I am sorry.) Our long podcasting break has been due to my own health and disability. On Tuesday, September 19, I had my final Spinal Cord Stimulator surgery. I’m an electricity producing cyborg now, very exciting stuff.
Despite being holed up in bed, the following story quite literally ejected me out of my little pillow-fort two weeks ago in rage. Even if “everything turns out fine” and “it will never get passed” like people say when issues do not affect them, the ramifications of the following are very serious.
We have covered articles about Medicaid cuts. This is worse. Congress is trying to rip apart ADA, specifically Title III. The article reporting on the issue is entitled, “The Quiet Attack on the ADA Making Its Way through Congress” by Eliza Schultz, Rebecca Cokley, and Rebecca Vallas of the Center for American Progress.
Free and Low Cost Healthcare
Frill-Ability has been absent for quite some time because honestly, I couldn’t find the enthusiasm to write with the seemingly infinite amount of human rights issues plaguing the world and the United States. I thought to myself, what kind of real difference could I make? A huge issue that I might be facing and many others already are is the loss of insurance. This is a death sentence for the disabled and chronically ill community.
One skill I do have is the power of research, and now is a time that we need to take advantage of our community’s amazing resources. We just don’t always know they are there. For example, there are free or low-cost clinics all over the nation who assist low-income and uninsured populations. (even veterinary care! ...coming soon...) I have tasked myself with eventually creating a master list for at least one or two per state, so that you can come here and find what you need.
Read MoreVirtual Reality: Explore New Worlds, Adaptively
VR will allow enriching experiences to individuals with chronic, debilitating conditions they would normally not enjoy who spend most of their time in their homes or hospitals. It's a safe place to socially interact with new people or connect with far-away loved ones. Other applications are anxiety reduction and somewhat contrarily, exposure therapy. One could escape to relax or face fears in a controlled environment.
Read MoreTrying New Medication: Is This Right for Me?
Trying a new medication for the first time can be a terrifying process. Too often doctors will nonchalantly toss something to you., skipping right over the side effects, effectively saying, "This'll do the trick," while you're left feeling like Neo in the Matrix with only the blue pill...
Read MoreWhat to Remember When Getting Your First Wheelchair: Part One
You've come to the conclusion that you might need a wheelchair for everyday use. This can be a scary decision, but it can be a positive, freeing one! Here are the first things should be in your plan of action:
1. Talk to your doctor!
This is seriously the most important part. Your medical need for a wheelchair is paramount. There are some patients that would benefit more from other assistive devices. Before you even think about getting a wheelchair, you need to think about getting to the root of your health issues. A wheelchair alone will not solve them, but it will help.
You don't have to be a person with any form of paralysis to use a wheelchair, but there are certain criteria that might make a doctor think a wheelchair isn't right for you or isn't right for you right now. A wheelchair is a powerful, awesome tool that can help you move when you cannot, reintegrate yourself into society, and exercise in new, interesting ways. You and your doctor can help make that decision together!
If in your discussion your doctor thinks a wheelchair is right for you, he or she can write you a Rx for your wheelchair which will give you a shot at getting it covered by insurance. This is not always the case. We will cover this in Part Two. (ex. I had a Rx, but I ended up paying out of pocket because of the crazy hassle and changing insurances.)
2. Research! Research! RESEARCH!
There are tonnes of wheelchair brands out there. You need to figure out what you like and what is best for you! Your professional's opinion will help with that latter part! My favourite, as I mentioned in this post, is Colours Wheelchair.
Colours is the brand I currently ride, and it fits all of my needs because I was able to specify everything I wanted based on my medical necessity, the type of terrain I encounter, my personality, and more. In my next post I will go more in depth about the buying process, and I will talk about a few more brands you might like as well!
3. Get Properly Fitted!
Okay, I lied, there are two "most important" parts. This is tied with number one. If your chair does not fit you correctly, it will be useless to you. My first chair was a beast, and I could barely move in it. My second chair only half fit me properly, and my upper back hurt me all the time. My current chair is just about perfect, but there are a couple of minor things I need to adjust. (No fault of Colours.)
This wouldn't have been an issue had I been able to get to someone who knew how to fit me, like a rep from a wheelchair company, or a very experienced PT. My friend on Facebook (who I won't yet name for privacy reasons) brought up a great point that was mentioned to me in the past that is key to consider here. Many times, able-bodied people don't know about our needs when we are sitting. Some might be following well-intentioned training or text book sort of material. This is not always true. Some have years of experience working with us and are more attuned to our needs. Do your due diligence when selecting one. Not every PT is right for you.
If you have the chance, go to Abilities Expo and get yourself fitted there. That is where I had some ideas about my new measurements. Others, I based on what other wheelchair users told me I needed to adjust. My footrest needed to come way up, my back needed to come way down, I needed a legitimate cushion, and I could have probably done with cutting a couple inches off my depth.
These are the things I took into account with my current chair along with a few others. I wanted a slight camber to my wheels to give me stability and help with uneven pavement along with aggressive tread tires. I also requested that the rear chair height be lower the the front chair height to help with the drainage of my bad leg. I was conservative with this at the first go, maybe an inch and a half difference, but being parallel to the ground is much too difficult for me, and my leg will not drain. So far, it seems to be making a difference.
I had to do my measurements on my own because I do not have much assistance in getting around. This is not anything I suggest which is why I preach so hard in getting a professional to help you with proper fit, thanks to a certain someone drilling it into my head. If I could have, I would have. Don't mess around with your wheelchair. It's your shiny beautiful vehicle and an extension of your body.
Important to note: If your condition tires you out, but it does not quite warrant an everyday wheelchair, you can still totally get a simpler folding wheelchair from a medical supply store and insurance might even cover it. If not, they are usually around $300-$400. I've even seen some cute pink "transfer" wheelchairs on eBay (ones you don't push yourself) if you have someone to push you around. Just make sure to buy yourself some good cushions as well because they do not have good support.
I hope this gave you a little assistance in your process! It definitely can be stressful and exciting. If you already have a chair, what was your first experience like? What would you tell others getting theirs for the first time? What questions would you like answered in Part Two (and potentially Three)? As always, Make Good with Your Ability Today!
Love, Sparkles, and Everything Awesome,
Sorel Estrada Volpe