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!

Making It: My Health Story and Bits of Advice

This blog is here not just to talk to you about the things I make, but how I, as an individual with disabilities, make it through daily living. There aren't enough voices for people with disabilities out there, and if there's any way I can make a difference, I am going to do my best. I have learned that as a patient, you are your own best advocate.

If you are someone like me, what does that mean? It can mean that some days your struggle is lonely because doctor after doctor disregards you. It requires intelligent research. When you finally get a solid lead or a diagnosis that sounds like it fits you, get to the library! Search through scholarly articles like it is your job! (If you have access to those search engines because of school, fantastic!) Google specialists, trials, support groups, anything that could help you learn and make a positive difference in your life. I also like using the pages of reputable organizations that support a chronic disease or condition to learn more about it. How do you know which are the good and bad? Check the sources. Did a doctor write it? Did the person compiling the information cite their references? These are key questions to ask.

Here is a little background on my story, taken partially from an old entry on a different blog: 

I was born with klippel-trenaunay syndrome/venous malformations in my right leg. They are benign vascular tumors that swell with blood, replace the muscle in my leg, and span from my upper knee to my hip. It's not a hereditary disease, and it's very different in every patient who has it. Some patients may have lesions on their skin, others have vast differences in the length and width of their limbs, some cases are more severe, and some are less severe. (They can appear in the arms as well as the legs.)

It also effects the ability of each person uniquely. For the following reasons, I have difficulty walking:

1. The effected leg has less muscle than a normal leg.

2. Some of the tumors interfere with the knee joint.

3. The tumors are very painful. Some days are better than others; it varies greatly, even within a day. I can sometimes predict what will cause pain or physical stress, but it's often unpredictable. 

A few of those predictable things that effect my condition negatively are increases in estrogen, remaining in any one position for extended periods of time, overuse, under-use, and changes in elevation/pressure. 

Here is what my leg looks like:

 When I first moved to the Bay Area from Chicago, it took me a long time to find a good doctor, but I was very thankful to find an amazing pain clinic that gave complete care and had me on a good treatment plan. Unfortunately, when I turned 26, my insurance under my parents ended, and I had no choice but to switch to the insurance that my work offered. Because of my pain issues, I have been on a medication that is a narcotic for years, and the clinic I like decided to a) keep me on it and b) increase the dosage. It was not their idea to have me on this long term (i.e. the rest of my life/many more years). It is too short acting of a medication. I imagine as it failed, they would explore other medicinal options, and as those failed, I was personally pushing for a spinal implant when things got bad enough at that very last step. She also used diet, herbal supplements, and psychological therapy as part of the regimen.

Unrelated to the pain, I also have legitimate mobility issues. My ability to walk wanes more and more every year. I can do short spurts, but the longer I use it, the more I limp, and at a point, the leg gives out completely due to a combination of the lack of muscle mass and the swelling. (I use a wheelchair about half of the time.) Many people ask if I could build up the muscle to make up for it, but the two things inhibiting that are the following:

a) it can only take so much activity before it is swollen to a point where it is useless, and

b) imagine if all of those white spots in the MRIs were removed---my leg would be like Swiss cheese. It's not a matter of it being slightly deficient; the muscle never grew where it was supposed to.

Other people ask if I have used a compression garment or tried PT. Yes, I have tried a compression garment, and my lack of success was because of the span; it was only thigh high. I recently found full tights, so I am looking to have more success with those. I will answer the second portion in a moment.

When I moved to the new insurance company because of my work, I thought I could no longer afford my old doctor, and when I tried to introduce myself to various new doctors, (it is a company where all of the doctors, hospitals, pharmacies--everything--are enclosed in one system, under one name, and you cannot leave it,) I wasn't just met with the understandable hesitation I expected, but I was given the wrong dosages of my medication, unclear information, told my case was too complicated, and told repeatedly that "new institution", in different forms, was moving away from narcotics as a whole.

When I presented my case, I explained to them my conditions (I also have a non-epileptic seizure disorder), the issues it caused me, (not just pain but physical impedance,) and how I needed complete care. Yes, I needed the medication I am on for the meantime, but I also need PT, a better wheelchair, opinions about my hip and back pain, suggestions about better medications for the future, and answers to why I was having severe digestive issues.

My first two doctors tried to give me another standard wheelchair from a medical supply company even though I specifically said I needed a PT to fit me for a better wheelchair than what I had from a company like TiLite (the chair for which my parents and I ended up splitting the cost.) I never got a PT referral from the first two in general. All of them have ignored or taken back what they said about my back issues. Only this last one is sort of paying attention to my mobility issues and referred me to a PT and person to figure out the digestive portion. (It's an unpleasant procedure, but I am happy it is being investigated.)

Angelic Pretty Model RinRin Doll and I with the personalized key necklaces I made for her and I, and me in my sweet new Aero T chair from TiLite! I'm wearing the Sweet Girl Room OP by Angelic Pretty; I picked the key as the item from the print, and then I designed the key to my liking. You may also recognize the pendant on my cane from the main page, made by me. :)

This last doctor also did not want/neglected to refill my medication when I requested a refill. With this new institution, you have to wait until the app says you are allowed to request a refill--normal. This is typical for any medication. I filled it on the 23rd of August, and on the 11th of September, I noticed I was a little low, but not out, so I requested a refill as the app said I was allowed to do so. (I thought to myself, too many times, I let myself get to the last pill or two and get in a bind, not going to let that happen again.) On Friday, the 12th, I had an appointment with my doctor, so I thought it would be perfect timing. We had one appointment previously, but it was over the phone, I figured it would be good for us to meet, and I had clearly a variety of issues to discuss. I also put in for a refill for my other medication because I noticed it was up for a refill too.

The medical assistant noted my Rx requests in the system when she saw me, and usually at new institution, at the end of an appointment, you can go to the pharmacy, and pick up you medications. The doctor and I had a mostly good discussion, but he reiterated what he did on the phone the couple weeks or so before about narcotic medication. I told him about my orientation with the pain clinic, my old pain clinic, and my desire to find other methods for pain relief as I was concerned about what this one was doing to my body and it's decreased effectiveness. I was told some general information and that the pain clinic would handle this kind of thing, an appointment I would not have until October 3rd. He also, like the other doctors, did not have an interest in requesting my records from my doctor who was outside of this institution and therefore to which had no access.

Directly after my visit, I went to the pharmacy, the Rx has not been approved, and the other, my seizure medication will take some time because it is a special order. (I am sensitive to the generic and need the brand name.) By Monday, the 15, I am out of my medication. I had noted to him and his assistant that the medication is becoming less effective, as expected, so some days I can manage with the 2 pills a day, but others I take 3. On a terrible day once, I had to take 4. (That usually happens during that time of the month because of the hormones further worsening everything.) On other days, I'll manage with one and suffer. This is why I can't get it to stretch the entire 30 days, although I try.

On Tuesday, I get a call saying my Rxs are ready. I am already in withdrawal at this point, and I have my SO take me to the pharmacy. Only one medication is ready. My doctor still has not approved the pain medication. I don't actually get the medication until Wednesday evening, and I only find out it is filled because I called. Even though I have it now, I am still very sick and am having trouble eating. When a person goes through withdrawal, it's like food poisoning. Every time I tried to eat, I instantly regretted it. Now, I am afraid to eat, but I am starving. I have some PediaSure to hold me over, and I am hoping by the end today to recover.

Most frustrating of all, I have missed three days of work. That angers me more than anything. Going to my job everyday is my independence. I fought hard to get to the point where I am at, and when I am reduced to feeling like I both a mother worrying constantly about the countless needs of her infant who is also myself because I cannot eat, sleep, and sometimes do things for myself, I feel robbed. My job (in museum education) is one of my passions; I like being there. I need to make money, but if I didn't, I would elect to be there. I take this medication (that I don't like very much) to be a functioning member of society in hopes that there is a better solution out there for me one day. 

There is some positive to all of this. I contacted my old pain clinic, I can afford to see my old doctor without insurance, and they can fit me in next week. To distract myself from the unpleasantness of being ill, I had some opportunity to work on something else I enjoy that applies to this space--3D printing! I'll have to find a way to connect my Instagram feed to here so you can actually see what I have been working on! I also want to thank those of you who have reached out to me on Facebook, the conversation is always appreciated! You keep me company when I'm down!

I don't know what difficulties I will face next or (better yet) what I will overcome, but I would like to continue to share them here with you alongside shop updates, 3D printing adventures, and a frilly thing here and there to keep things light and happy. Everyday, I try to remind myself that whatever I do, to do good. If I've ended the day doing something good, then I can feel okay with myself. When you are feeling stressed about your health like I do a lot and feel like you can't do much, remember this: Make good with your ability. I'll be here to help add the frills. ;)

Love,

Sorel Estrada Volpe