ABILITY Corps panel discussion during the United Nations 11th Session of the Conference of States Parties to the CRPD
Lesley Ann Gibbons: Which one is the shampoo?
Advances in “anytime, anywhere” technology that holds significant promise for people with visual disabilities.
My name is Lesley Ann Gibbons. I was raised in the United Kingdom, then I’ve lived the last seventeen years in the United States in Northern California. And I’m happy to be given the opportunity to chat with you a little bit about some of the changes in technology and how it’s impacting an individual sense of independence and enhancing their everyday experience.
So can I get a show of hands? How many of you stayed in a hotel last night? How many of you took a shower today? (laughter) And how many of you made the terrible mistake of using the lotion instead of the shampoo? (laughter) Sounds silly doesn’t it? But for people who are visually impaired, figuring out which one the shampoo is can be the difference between a really lousy day and a great day.
Six years ago, individuals with disabilities relied almost entirely on specialized, standalone devices and software programs. But those tools and supports that were once ridiculously expensive or difficult to use are now commonplace in our classrooms, work places, and our pockets. And today, although consumer-level advances and mainstream technologies are not always born accessible, look at the following advances that we’ve seen in technology over the years.
There’s been a huge reduction in power needs, and an increased availability of new, more affordable, and smaller power sources. There’ve been significant improvements in networks and broadband capabilities. For example, high speed internet is now widely available in most public places — even in the UN — and so are smart phones. User interfaces and input options have increased. For example, touchscreens and gesture recognition are now commonplace.
Social media- driven community developments such as Kickstarter and other crowdfunding resources makes it possible for people who have just an idea to seek funding in new and creative ways. And today, having access to development tools such as 3D printers and app development tools is by no means unusual. This explosion of newfound technologies has profoundly affected the ways in which people with and without disabilities are using digital devices and resources. Assistive technology functionality has finally moved into the mainstream, and we now face a new demand for tools that are context-specific, user-created, data driven and nimble, embeddable, networked, and wearable.
So how are wearables changing assistive technology? And what about that shampoo?
With ever-smaller and less-expensive hardware and component pieces exploding on the marketplace, wearable technologies are fast becoming a fixture in our everyday lives, primarily in the form of fitness trackers and smartwatches. But beyond being able to measure our heart rate and count our steps, wearable technologies hold significant promise for people with a visual impairment.
Imagine this: You’ve arrived at your hotel last night, and you go for a shower. In the bathroom are four small bottles, all the same size and shape. You assume they’re shampoo and conditioner, shower gel and lotion. But how do you know which one is which? If you have eyes and still have your glasses on, you can read the small print, and you lay the bottles out so you use the right one in the right order. But what do you do if you’re blind, or you’re unable to read the print?
For a person whose blind or has a severe visual impairment, this is a typical day-to-day problem. One of the many “gotchas” that limit their independence.
With the advent of live-streaming on mobile phones, one solution might be call a friend. Ask them which bottle is which. The limitation of this is just the availability, and ultimately the patience of your friend. The better solution might be to have a large pool of friends or volunteers who can be contacted.
This is what Be My Eyes, the smart phone app, has set up. It’s technology that will quickly connect the user from their smartphone video feed to a volunteer, and the audio and video link enables the right bottle to be found. The service is free and well used. It’s ideal for simple problems, but it limits you to those problems that only need a video feed and a volunteer.
Dr. Moses deGraft-Johnson: Key issues in public health
A perspective on Ghana’s healthcare expenditure, policies and outcomes
My name is Dr. Moses deGraft-Johnson. The term “assistive technology” is defined by the World Health Organization as an umbrella term that covers systems and services that are related to the delivery of assistive products and services, and the whole purpose of this is to aid an individual by giving them independence and promoting their overall wellbeing.
Now, as my colleague here just showed us some very cool innovations, some of the innovations that we are very familiar with are the simplest things such as the hearing aids, wheelchairs, and prosthesis. Even something as simple as pill organizers, because this is something even people without a true disability utilize, you know? My mother utilizes pill organizers. So we find that there are certain assistive technologies that even individuals who do not have a true disability also utilize in their daily lives. And we’re seeing more and more of that globally; more than one billion people need one or more assistive product.
Now this is the part that I really want to get into, because this really about what I do for a living, and recently what we’ve seen is that the World Health Organization released some data, and what we see is a rise in non-communicable diseases that are causing persons with disability. And one of the most common ones that was mentioned was diabetes. But also, along with diabetes was hypertension and hyperlipidemia, also known simply as high cholesterol, obesity, and smoking.
Now what’s interesting is that these five variables are also known in cardiovascular medicine as the five major risk factors for a major cardiovascular event. They lead to something called atheromatous plaque. This is plaque formation of buildup in our blood vessels. This is an example of a normal coronary artery in the heart, and as we see, over time we get damages, buildups, and eventually we have lack of perfusion, or lack of blood flow. And that’s what eventually leads to heart attacks, strokes, and poor circulation, commonly known as “PAD.”
Now, at the Heart and Vascular Institute, what we have done is we have an initiative called the Save a Limb Initiative. One of the things that my goal was was to at least limit the amount of amputations that were occurring in that community. When we see patients who have these sorts of problems, the first thing we do after we’ve assessed them is called acute limb ischemia. We take them into the operating room and utilize a GE system called a C-ARM. What it does is it’s an X-ray that takes pictures of the legs from the bellybutton all the way down to the feet, okay. We use contrast dye to inject into the patients so it will allow us to give us an image, sort of like this. So this first picture here… clearly you don’t need to be a doctor to see there’s a significant problem here. This is called the superficial femoral artery. this is the big vessel that lies between your hip and your knee. It’s like a highway that’s not complete because there’s something missing here, right in the middle. So this individual has developed a blockage in that blood vessel that has definitely caused a total occlusion of blood flow flowing from this part, which is coming from the belly button area going down to the knee.
So once we take that picture with that GE system, I’m able to see this and initial, and right here I’m able to, just like the plumber does, you know, you snake the pipes. So here you have a specific type of water system that I use to cross the artery. And once I cross the water system, on this side… I’m going to show you this picture here… I use a system called a jetstream atherectomy device. Now this system is a system that is made by a company called Boston Scientific. Boston Scientific is a medical device company based out of Maple Grove Minneapolis, in Minnesota. And what it is is that basically we use this device, it’s like a drilling system. Just like in the oil fields, they drill the ground. We use this system over that wire that I’ve put into the system and we’re able to go over the wire and clean out the plaques that have formed. Once that plaque is cleaned out, we use a balloon system to stretch out the blood vessels to really give it a wide opening, and sometimes once it stays open, if it stays open it’s fine but if it doesn’t stay open, it has a tendency to constrict again, and that’s when we have a tendency to put in a stent to keep it open. So in this picture right here, this diagram, you see that we were successful opening up this total occlusion here, and opening it up and restoring blood flow back to the limb.
This is an actual photograph of one of my patients. Unfortunately, this was a gentleman that we were not able to save his leg. So this is six weeks after surgery after I amputated. This is called a BKA, a below the knee amputation. And I often say that if you’re not fortunate enough for me to save the limb, I’d rather you have a below the knee amputation versus above the knee amputation because functionality-wise it’s better for the individual because we’re able to really fit him very well with a good prosthesis, that it can go back and handle it and walk as if nothing ever happened. But it becomes a huge challenge once you go above the knee. It’s very hard to fit someone for any good prosthesis, for them to bear weight.
We call this the “stump line.” And we have a tendency to have a lot of breakdown on this stump line. So it just makes things a little bit difficult. So unfortunately, I was not able to save this man’s leg since we had the surgery, and this is him and his wife after surgery.
So this is the sort of assistive technology we’re used to seeing. And in the past, I have to admit, I have to be clear and be honest with you, I never really paid attention to a lot of this stuff until I met Chet Cooper. That’s when I started to really focus and pay attention to these things. They’re right in front of us, they’re right around us, but we’re so busy with our daily lives we don’t pay attention to things that are happening. But this is now a big problem and a part of my practice right now, of what I do.
So once we have saved the limb, the question is then how do you prevent them from ending up like this gentleman. So we have a technology called the SPY. The SPY does was developed by a company called Novadaq and then they sold it off to a company called Stryker. Stryker is a big medical device company that does a lot of spine surgery for people with back problems and this sort of thing. So it’s kind of shocking why they got into the vascular business. But anyway, with SPY technology, what it does is that it utilizes a fluorescent agent that we inject into the patient, so after the patient has had the revascularization procedure, they follow up at the office, we inject them with the fluorescent agent, and what it does is that we’re able to put this camera right on their feet, right overhead, and it gives us this thermal imaging.
So when you see this right here, that’s good news. Actually the redder, the more red it is, the better it is. It means you have really good flow. And as the area gets a little bit blue, that means you have diminishing blood flow in that area. And when it gets to be like this, you know you have a serious problem.
So this type of stuff is what we’ve been doing for people in Miami, for people in the Florida region. And so I started to take this type of practice back to Ghana. Ghana is very interesting to me, not only because I’m from Ghana, but I’ve been very impressed with the government of Ghana in terms of their initiatives, which is a little bit surprising to me because in those parts of the world there’s a stigma that is associated with individuals or persons with disability.
Ghana is a small country in West Africa, the population is about 28 million. The GDP is about $130 billion, that puts them at number 12 out of 52 of African countries, and it’s actually the blueprint for African democracy. It’s a constitutional republic. And English is the official language of the country. About 15 percent of the Ghana population are persons with disability.
In 2006, the country passed a disability law, and the purpose for this was to end discrimination against individuals with disability in the country. The country has been working very very hard to improve the living conditions of individuals that live there. My foundation, what we’ve done is that, we’re really focusing on, because disabilities, there are so many causes of disabilities, from congenital diseases to hereditary diseases and also acquired diseases. With the acquired diseases, my focus is really on the noncommunicable diseases, because it really falls in line with something we have knowledge on.
So what I’ve done is that I’ve invested my own money into building a hospital. This is a rendering, a rendition, of the hospital, the deGraft Research Hospital, and the purpose of this hospital is to facilitate the work that we have done very successfully in Florida. This is more images, and this is the current progress of the hospital. So hopefully by the end of next year we will complete this project, and then we will be able to offer the same things we offer the people over in Florida, in Ghana. Thank you.
Chet Cooper: Building the first accessible online career fair for job seekers with disabilities
Pablo Ramón: Creating accessibility kits for hotels while expanding sustainable accessible tourism.
Moderated by Lia Martirosyan, co-founder of ABILITY Corps