What 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

4 Things to Do When Having Problems at Work

I was flipping through Tumblr the other day, and I came across this post by user zubat and the following linked fact sheet (section 14(c) of the Fair Labor Standards Act) on wages for people with disabilities in the United States.  It perturbed me, and I think it's something we need to talk about. In some cases, it might be used for good, but I feel that it has the potential for many employers to take advantage of their employees with disabilities. Have you been affected by this law or do  you know someone who has? Please take a moment to watch the video and discuss in the comments.

Note: I'm highly uncomfortable with the blanket terminology in section 14(c) to describe intellectual disabilities/potential neurological issues as "mental retardation," and I hated repeating it. The R word is highly abused, and I would like to talk about that and other words that should probably be phased out in another entry. Let's just stop using it, okay? Cool? Cool.

It's never an easy situation when you feel as if you are being treated unfairly in the workplace. Anything that you could potentially do in defence of yourself could result in the loss of employment and the end of your ability to care for yourself and your family, if applicable. However, there are resources available for you out there, and there are things you can do for yourself.

The first things you might want to do are:

1. Calmly collect your thoughts, and record everything that is happening (relevant to unfair treatment) day by day in a journal that you keep in a safe place away from work.

2. Reserve your feelings about your work conflict only to trustworthy individuals outside of the workplace.

3. Collect all paperwork you were given as a new hire from Human Resources so you can review to what you are legally entitled. Do not make HR aware that you are doing this for the reasons that you are. If you need extra copies of anything, you can ask. Just say that you misplaced something and you needed an extra copy. They are legally obliged to give it to you.

In most cases, HR is there to help you and are usually awesome people! As I am unaware of what your legal situation might be, I tend to err on the side of caution. This is why I would direct you to see #4 first.

4. Speak with an advocacy group or legal counsel to see if what is happening violates your rights and an offer a viewpoint of what would be in your best interests.  An introductory visit or phone call sometimes will be at no cost to you, and there are many groups that, if you have a case, that do not take a fee from you personally, until a case is won. (This is called a contingency fee. It depends on the type of lawyer and the case, to my limited understanding.)

If you are having trouble locating groups or attorneys on your own, let me know, and I can go into more depth at a later date. I hope this helped a little if you are having some trouble at work. Remember, if you are working and having a rough time there, try to set a few minutes of the day when you get home for something positive and uplifting. When I was going through the same thing, the worst part was that some days I let it swallow me whole. Don't forget to let the light in.

Please remember that you are amazing, no matter how others might make you feel sometimes. We can help ourselves feel better (and help others!) by making good with our abilities. ✰ See you next time!

Sorel Estrada Volpe
Frill-Ability, Inc

Interview - Hoo-Box: Robotic Assistive Technology for Everyone

Have you ever seen a Roomba vacuum cleaner by iRobot? If you haven't seen one in person or the hilarious videos of cats riding them around people's homes, they are disc-shaped robots ranging in size from 216 mm - 370 mm whose original function could clean your floors by various methods depending on the model. What sets these apart from other cleaners is that they do the job for you, sensing objects that might be in the way, assessing when an area has been completely cleaned, and putting itself away. This, itself, is already something that assists people with and without disabilities by making cleaning less strenuous, but Paulo Pinheiro, co-founder of Hoo-Box, saw a greater opportunity. 

Hoo-Box strives for the following goal: human-robot interactions that will increase our quality of life, particularly between the doctor-patient relationship and for people with disabilities. Today, we are going to chat with Paulo and learn more about his innovative ideas that are already helping people today.

ElleJay: First, what inspired you to create Hoo-Box?

Paulo: At the end of 2013, when I received my PhD in robotics, I realized that my desk was full of small products I've assembled and distributed over the past years. Many of the products are now helping hobbyists, robot lovers, and my best customers who are the older adults with disabilities and parents who were using the robotic little devices to interact with their children. At that time, I ran into the situation where I had a few customers before I had the company name. Hoo-Box was designed to keep that robotic flame alive and to continue distributing robotics goods for people who have no understanding in electronics at all.

ElleJay: Chimera and Akeso are your main projects, and it seems like the common thread between the three, and all of your work, is adding humanization to automatization which is usually the opposite of what we think of when we add robots to our everyday lives. Could you tell us more about how your projects benefit humanity in this way and tell us about each of their functions? 

Paulo: Chimera was the first product of Hoo-Box. Cleaning up a house is not always an easy task. Vacuum cleaning robot are wonderful but might be inconvenient specially for older adults or people with disabilities. Chimera is a small device to enhance the intelligence of iRobot Roomba robots. This little device has a camera and huge power of navigation. Once it is connected to the Roomba, the robot is able to find its localization position at home and to create cleaning routines based on the behaviors of the residents.

Chimera maps the entire house detecting when each room is busy of people and learning the dirty pattern. Then, the robot can automatically clean the rooms when the owners are not at home or clean up the kitchen or dinner room at night or after the meals.

The second one is Akeso, a low-cost telepresence robot that has been used in medical facilities to allow physicians, staff and visitors to interact with patients from a distant location. The current goal of Akeso is to help older adults with Alzheimer's disease age-in-place by providing different services, such as automated reminders for daily tasks and assistive step-by-step guidance.

ElleJay: Those of us who are not as skilled in building and in inventing technology (like myself, I have none, =P) often either only have a loose understanding of how the electronics we use on an everyday basis actually function or sometimes are too intimidated to learn. However, it's definitely not as scary as it seems; if there's one thing I learned from working as a museum educator, it's that education is for everyone, and no one should be excluded from learning a little something about a topic.

Beginning to understand how the world around us functions, especially amazing technology like you've built, enriches us and might us inspire us to go out to make something of our own that is completely different. That said, could you teach us a little bit about some of the most important aspects of the technology behind Hoo-Box?

Paulo: Part of Hoo-Box's products were made to be used with technologies that you already have at home or devices that are commercially available, as the iRobot Roomba. What we do is to deliver an assistive solution for them.  However, we also encourage you to develop your own solutions using the tools we constantly put available for developers. That's why some of our products are great for kids and curious in robotics.

Of course you can use some of our sophisticated and complex localization and navigation algorithms for the robots. But we teach you how to control your robot using your smartphone accelerometer or using your smile or hands movements, and that seems to be way cooler!

"...we teach you how to control your robot using your smartphone accelerometer or using your smile or hands movements, and that seems to be way cooler!"

Controlling Roomba using the iphone's accelerometer trough our web based app.

A video posted by Hoo-Box Robotics (@hooboxofficial) on Apr 4, 2014 at 4:04pm PDT

ElleJay: I've noticed on your Instagram some amazing previews of things you are doing for people with disabilities, most recently the wheelchair bumper and proximity sensor for motorized chairs, and a drive for motorized chairs that patients who have experienced strokes who cannot use a joystick hand control. Could you tell us a little about those? Do you plan on making these widely available one day, and do you continue on doing work related to the disabled community?

Paulo: Working on assistive robotics applications for individuals with neurological conditions or mobility disabilities is for sure my passion. In recent months we have developed a few solutions for motorized wheelchair, such as intelligent bumpers, cliff sensors and human-robot interfaces. After the patient recovers from a stroke, special attention must be given to bring the patient back to a normal life. Some of these patients are using wheelchairs now and they are not able to drive it using a joystick. We have developed hands-free motion controls using EMG (Electromyography [more high level explanation here]) and air flow to select a command of the navigation menu. I'm working hard to make part of these products widely available in 2015.

ElleJay: Lastly, what advice would you give someone wanting to pursue a career in robotics/the tech industry that would also benefit humankind in some way?

Paulo: Never forget that a robot always has a mission. A mission to help someone. No matter how many robots you will design in your life or for what sectors. During your scientist /engineer life, you should think about to develop at least one assistive solution for people with disabilities. It is one of the responsibilities you earn when you work on robotics.

"Never forget that a robot always has a mission. A mission to help someone. No matter how many robots you will design in your life or for what sectors. During your scientist /engineer life, you should think about to develop at least one assistive solution for people with disabilities. It is one of the responsibilities you earn when you work on robotics."

ElleJay: Thank you and your team so much for your time, Paulo, and for being such a shining example of someone who makes good with his ability everyday!

If you have questions for Paulo, please leave them in the comments! I correspond with him via email, so I can relay them, or he might respond here if he has time! He also has an Instagram for his company linked above on his name at the beginning of this interview where he can be contacted.

As always, set an example for everyone around you, and Make Good with Your Ability Today, too!

Frill-Ability's Purpose and The Importance of Advocacy

On November 13th, I was honoured to receive an invitation to the Tech Awards Gala, an awards ceremony where laureates were recognized who showed in an extraordinary way that with a good idea, hard work, and an entrepreneurial spirit, you can greatly benefit society. Here are a few highlights from the event. (See what I wore here.)

I am more inspired than ever to make Frill-Ability a resource for the disabled community and a voice for individuals with disabilities. As this website was recently constructed, you might wonder just what I'm doing here and furthermore have a hard time taking me seriously. What's with all of the cutesy stuff, anyway?

First, I have been reaching out to companies that have products that I believe can make our lives easier, have the potential to do so, or spread messages of awareness. As I create connections, I will review products so that you can become aware of some of the most effective tools in the current market. These products and tools may be in the range of assistive devices, general educational tools to empower minds of all ages, fashion that is kind to our body or spreads a special message, or wearable tech that helps us monitor our health while being stylish and having fun.

Secondly, I want to share your story. The only way to become more aware is by educating and learning. Let's do this together. Tell me your uncommon journey, how you would like others to see your disability, and most importantly how you make good with your ability every day. You can do this by emailing me. The only rules are that your thoughts are well-written, contain no offensive language or content, that your text contain no more than 500 words. One picture (which may be a collage) and/or one embedded video, following the same rules, are also allowed and encouraged.

Lastly, I want to bring my skill as an educator to you in a special way, but for now, that is a secret! My B.S. is in Natural Science with minors in Chemistry and Mathematics, I have some graduate level Library Information Science experience, and I have spent most of my professional life in education, formally and informally, in academia, the library, and museums. This is my greatest passion, showing people that something they thought previously they were not capable of doing, they are and more. I am particularly focused on the STEAM movement and a design challenge learning atmosphere. Please stay tuned! If all works out, it will be wonderful!

I'll also be attending events relevant to the disabled community (as much as I can) and covering them for Frill-Ability, so you can be informed about all of the inspiring speakers, exciting products, and upcoming projects that you might not have been aware of otherwise. My first will be the Abilities Expo in San Jose which I introduce in the following video:

In the last two days, after years of feeling underestimated, discriminated against, and ignored by a variety of individuals, someone who I admire and respect beyond description put their faith in me. More than that, they took time to listen and treated me as an equal. Disturbingly, when some people saw this, they were surprised and wondered how in the world I could accomplish that. However, there was a certain satisfaction in that alone, that such a person as myself could do such a thing, because maybe they, that group that finds us lesser, will finally start to notice.

There is a certain type of human that no matter how educated/experienced/talented/kind/productive/A+ human you are, if you do not fit into a certain category (especially if you start to receive praise from other sources) they will find any reason to reject or ignore your existence.That is something about which I would like to speak in detail at another time, however, for me, that is one of the worst parts of being a person with disabilities, and the last thing I need in my day.

We need disability advocacy because they are the type of person who finds a legal way to leave your workplace inaccessible.We need advocacy because they are the people who stare and ask “What’s wrong with you? You don’t look sick.” We need advocacy because they are the people who take away our voice and insist we cannot do anything for ourselves after insisting time and time again that we can. Those types of negative attitudes are what I am dedicated to combating, and I promise to do my best to make good with the ability that I have so that I can serve you with every gram of it.

I look forward to working together with you to create a more accessible, happy landscape for all us.

Sorel Estrada Volpe

Frill-Ability.com

Make Good with Your Ability Today

Moon Prism Power...Print!

Right around the time Sailor Moon Crystal and the remastered Sailor Moon came out on Hulu Plus was very close to the same I got my Makerbot Replicator Mini. My passion for my Sailor Moon was at an all time high, and I would look at things and think, "I could make that..." If you follow me on Instagram or Twitter, you've probably seen some of the other inspired pieces or direct re-makes of props like my Luna pendant, the Triple Moon pendant (also inspired by Pagan symbolism), and the Uranus Transformation Wand (1) (2) (I've gone through an account name change if you are confused about my old tags). However, the piece I was most excited about and that I designed first was the henshin brooch! It was quite easy because the shapes are very basic, and I based it off the following image from the  Sailor Moon Crystal series:

My first prototype had space for LEDs if I wanted to incorporate them, and I am still saving that design for a later date. However, I wanted to share the henshin brooch as soon as possible so I modified it to be a plastic-only product with the exception of any jewelry pieces like pin-backs, cords, or felt backing. While I do not have a dual-extruder, I was able to get up to three different colours of plastic in this piece! Hooray! Unfortunately, the jewels are all one colour for the time being, but if I play with the design, maybe I can futz around with that. For now, I can paint it if anyone is really interested.

As is stands, I really like it! What do you think? I would love your feedback! These can go up for sale fairly soon; I just need to gather a few more supplies. In the meantime, I am printing a whole bunch of these puppies, which means you can tell me the kinds of colours you like, and I can take that into consideration. So far, the jewels and bottom layer will be one colour (ice blue in the first picture), the moon, tiny jewels, and platform another color (gold yellow in the first picture), the star, the third colour, (pink in the first picture,) and the last jewel the same colour as the second colour, preferably, (gold yellow in the first picture). 

I also have more Triple Moon pendants coming in three colours of filament per product, a brand new design, and more! For now, enjoy some fun preliminary pictures of the Henshin Brooch! I hope you like it and that it makes everyone who wears it feel like a magical girl or boy!

I wish I had a cane that looked like a majestic transformation wand! Next project?!

This one is a sample. It's not quite perfect, so it won't be for sale, but if you like these colours, this combo can be available. I stuck it on a cord just to put it on my body as soon as possible. It is planned to be on a pin-back, but if you like the necklace option, let me know!

just because I was feeling silly...

Make good and *~*magic*~* with your ability!

Love,

Sorel Estrada Volpe