DEVICE INNOVATION PROGRAM:
I use a 4-wheeled walker called a ‘rollator’ to allow me to walk instead of being in a scooter or wheelchair. The first time I used it outside the halls of a hospital, many problems came to light. The small hard plastic wheels were no match for even the smoothest of sidewalks since they all have expansion seams, which regularly trap the wheels and force you to immediately stop. Then there are things like rough streets, the dimpled mats serving the sight-impaired, and unrepaired sidewalks. That bumping and vibrating took me to the neurologist with both carpal tunnel and ulnar tunnel problems, requiring surgery to repair. He told me that he now sees many older people with these problems and all of them are rollator based. I decided to do something. So, since I travel a lot for my advocacy in the Affordable Housing arena, I used this as an opportunity to interview every person I saw using one of these. A few people just walked away reaching for their pepper spray cans, I didn’t need to pursue them. Most, thankfully, once they saw my device were all too happy to tell me how awful theirs was. After 3 years and over 300 interviews, I developed a list of 12 features for the ‘Dream’ walker. After a couple of false starts, we are formally partnered with The Pasadena Art Center School of Design’s best product designers to have a group of them produce a prototype with my guidance and assistance, and schematics, drawings, etc. necessary for both patent submission and production by Mid-December 2017. The prototype and later the production version will travel with us on our bus trip to use both for design review and as evidence of our capability to produce a line of similarly revolutionary products.
THE BUS TRIP:
Our annual ‘Drive For Accessibility’ will take our ‘Abilified’ bus to towns and parks across America. It is the seminal event from which all other projects spring, and will be extremely visible as we roll down America’s highways and visit towns large and small to give people everywhere hope of a more accessible future. Wherever we stop – whether for fuel, food or lodging, we will welcome any and all to tour and see the amazing things already available to help them, their parents, grandparents, or anyone else who finds the built environment too difficult to navigate. What’s available on line or at shows like CES or any of the true technology exhibitions are rarely seen by those that need them most. Heck, I spend a fair amount of time searching them out, and I don’t come close to keeping up with all the inventions and innovation out there. That is why we are inviting those vendors to bring us their best and install it as it should be installed, so that everyone has the same chance regardless of location or economic situation to touch and feel what life can be like, many times, if the merely ask.
I have fought all my life for transparency and inclusion. What angers me the most is that there are many governmental organizations specifically directed to be all inclusive – having no reason for private meetings, or closed doors, however, every one of the many of which I have been a part never obey that directive. As soon as the door closes, something that should not be happening is. I will not allow for that in my organization. There should be nothing in which we are involved, aside from interviews where the interviewee has requested privacy, or a non-disclosure agreement has been signed, that is a secret. In that same spirit, we will not exclude anyone from our demonstration area, unless they are wielding a weapon, or are a danger to others present.
I am currently in discussions with several newspapers and networks to cover our daily progress, and follow us as we tour the nation and meet people. I am so excited to even have an opportunity to do this, and can’t wait to get started. The Bus itself, once we are blessed with one, will be wrapped in a colorful representation of our logo, our sponsor’s logos, and a list of the sponsors who make the trip possible.
The Bus: We are just beginning to get our message out there, and our largest need at present is THE BUS. I ask everyone if they know anyone who might either have one or know where to look. I firmly believe that some generous soul or organization will, with the promise of a hearty tax deduction, make our bus reality. So, as I always do, Have a bus?
Our Documentary Series:
First, in each of 20 predetermined cities and 5 National Parks, we will hold one on one recorded interviews with disabled seniors, identified in advance by the local Disability Service Organizations and service agencies who want their voice to be heard. Of course, anyone not wishing to disclose their identity will have theirs concealed during the interview. Our aim is to allow people who may frequently be heard, but rarely listened to, to show us and tell us how deeply disability affects their lives. What their life was like prior to being disabled, how it has changed, how they’ve tried to improve it, what happened, what worked and what didn’t. If they use a device of some kind to ameliorate the negative effects of their condition, how it works, how it doesn’t and what they wish they could still do and cannot. There are several stories we intend to tell with our aggregated library of interviews. Not only will we have an accurate measure of how well various assistive technologies are serving their intended purposes, but we will have the story of how several communities of people are aging. As a long-term survivor of HIV-infection myself, I am but one of a myriad of different survival stories. Long term survivors over 50 in Montana, where the air is cleaner, but the care is less available may tell a very different story. We are funded to find that out. The big story, which our films will bear out is that it’s time to stop ignoring our aging population, especially those whose disabilities have unfairly and undeniably classified them as ‘useless’, a burden, and unwelcome in the places that everyone else takes for granted. So many people only need an opportunity to contribute to something not just to show their worth, but to feel worthwhile. Nothing disrupts a person’s life like not belonging to something. I say that from personal experience, and thank God volunteering was available at the time I needed it. Look, I’m no saint, and I wish I had acted differently with my own grandparents, but the fact is that not only did they scare me, something I am still working on in therapy, I just didn’t want to be bothered. Write a check, sure, actually spending quality time with them, no way. I seem to have forgotten how much they loved me as a child and were my ‘friend’ when my parents weren’t. I have learned as I have started this project that my feelings and worse are the norm – not the exception. I watch people every day – my neighbors – who used to be physicians and engineers in their homelands just longing for that chance to be vital and contribute again. We are going to give them that chance and more.
The Guide for All Disabled Americans –
Second, we are going to take maximum advantage of our travels, and begin, via guided mapathons, to build the first inclusive guide to accessible America. In addition to wheelchair access, which various applications address in small areas of the nation, we will include all classes of disability: sight impairment, hearing and speech impairment, cognitive impairment, and mobility challenges. Properly evaluating a sight for these different conditions requires training. We will be conducting large training events to ensure our listings are meaningful to disabled people and their caregivers. As someone who travels a fair amount, and always reserves an ‘accessible’ room, I can talk to the fact that while the ADA is a great idea, the way in which it is represented and enforced leaves a lot to be desired. I can stay at two different hotels that are in the same Hotel group, yet, I never know what to expect to encounter in an ‘accessible’ room. Sometimes it stops with a door bell and both a high and a low peep holes. Sometimes it includes a roll in shower, but the toilet seat is too low to use safely. My favorite omission, if one can have a favorite, is not leaving enough room between the bed and the wall or the bed and the other furniture in the room for my rollator to get around. If I am asked to go to dinner with colleagues, there is always some hiccup with getting in and out of the restaurant, having high enough seating to reach my food or fitting my walker into the bathroom, despite the sign that always has the famous wheelchair emblem on the door. And so it goes. Every disabled person I tell about this project immediately breaks in to their favorite restaurant or hotel story, and every one of them can’t wait to start building the guide. My favorite request is to have listings of gas/service stations that are both equipped and willing to pump gas for those of us who can’t. We are currently in discussion with an awesome existing guide maker that is seeking to expand their guide to include all disabilities rather than only wheelchairs, like their version one covers.
The guide itself is extremely important to me personally, but building it by building a nationwide community of volunteers is even more so, as this project gives people of all ages and all level of ability or disability a chance to be part of something, doing something beneficial to others who like themselves are impaired in some way. The proof of their abilities and creativity, and worth can all be bundled up in this project, which is what it’s all about now, isn’t it? Abilities. Many people have tried to convince me that travel and in-person interviews are ‘old technology and unnecessary.’ One of the things that sets us apart from the other companies dealing with older disabled people and the growing number of seniors in our nation, is our eagerness to meet and understand and get to know our community personally. Not only does it give us a better feel for the people with whom we meet, more importantly, it gives them a chance to see that we really care and care enough to come to them.
Many of the people in my building are from the Ukraine and other former eastern bloc nations, they don’t speak much English, and one needs to get to know them before they are willing to ‘let you in.’ This makes perfect sense, as talking about one’s problems was frowned on in their past, especially if their comments involved ‘the system’ as these may include. To some this seems old school and not taking advantage of today’s technology. More than one of us misses personal contact, and the fear that ‘big brother’ may be watching when we communicate via the various video call platforms available to us all. This fear is enough to keep people from willingly participating in our mission. So, I, for one, look forward to getting out there and meeting people from the four corners of our vast nation, as inclusion is central to our project’s accuracy.