There is a small but growing movement among people with disabilities, engineers, students, families, and others who cherish personal independence and freedom of choice to take access to Assistive Technology (AT) to its next stage.
This is an opportunity for all of us to gain control over the tools we need to support ourselves in truly customized ways. It is just beginning, but this movement to control how we design, create and use AT is something we all need to embrace within our local communities.
About the ATMakers Movement
How does this initiative propose to accomplish an effective collaboration?
ATMakers.org is an experiment in solving problems in Assistive Technology using the skills and tools of the Maker community. In short, we’ve seen tools in the Open-Source Hardware and Software community that can be incredibly useful for people with severe physical and cognitive challenges – we’d like to help introduce these communities to each other.
Founded by Bill Binko, co-founder and principal technologist at LessonPix.com, we hope to provide descriptions and instructions that allow a community of Makers (for example a high-school robotics club or regulars at a MakerSpace) to build customized technology solutions for Assistive Technology Professionals and individuals whose lives would be enriched by them.
AT Makers sees the solution to access as needing local collaboration between people with science and engineering backgrounds, AT professionals, and users of AT. The immediate outcomes are building relationships between existing stakeholders:
STEM clubs & Robotics Teams
Complete service projects with our step-by-step guides
Apply your skills where they’re needed today
AT Professionals & Users
Find Makers in your area who can help
Learn about new technology you need
Makers & Engineers
Bring your skills to bear on today’s AT problems
Help mentor the next generation of AT Engineers
The Guides that ATMakers have developed involved straightforward projects that can be used to create ongoing collaboration around more sophisticated projects at larger scale. These guides can be found at http://atmakers.org/category/guides/ and include such ideas as:
How to get your AT pieces printed when you don’t have a 3D printer
Making 3D printed Switches
3D printed Camera Mounts
IOS Switch Controls on a budget using Bluetooth keyboards
An end-to-end video of how to make the Cariboo Adaptation
Connecting an AT switch as a PC keyboard for under $20
We don’t have to wait until some large medical manufacturer or medical supply system decides that our AT needs will produce enough revenue to warrant design and production. ATMakers says that we can do much of what we need by working together using community skills and lived experience to actually begin to customize what we need at a reasonable cost.
We have to become more conversant with the latest production and manufacturing technologies, and we have to find the people with the skills to help us make this real. These people are already in our high schools and elsewhere in our communities and they are already interested in taking on challenging new projects that will actually be of use in our community.
Time to reach out, learn together, and build what we need!
Society urges people with hidden disabilities, like me, to deny we have a disability. From the time we are born, we are bombarded with messages that disability is a negative thing – something to be avoided and feared. Our society teaches us people with disabilities are less capable, less valuable, less important, and less desirable than people without disabilities.
Some people treat us with disdain, some avert their eyes, some look with pity or tell us they are “ praying” for us—looking at the lives of people with disabilities as inspiration—imagining themselves with a disability and imagining that it would be horrible. All of these undermine our personhood as people with disabilities. We are either saints worthy of admiration for just living our day-to-day life, or pitiful and worthy of shame.
As people with disabilities we hear, live, and breathe these low expectations and then incorporate these messages inside our very being, where negative emotions are turned inward, creating low self-esteem and poor self-confidence. These views have long lasting, detrimental effects on our mental health. When people do not acknowledge their disability, cannot accept and embrace it, aren’t aware of the disability community, and do not advocate for their needs, the result is a small life full of self loathing.
When we deny we have a disability or believe that our disability is something negative, this can keep us from advocating for ourselves, accessing assistive technology (AT), and asking for accommodations that we need for full participation. I’ve felt guilty about my needs and kept quiet to my own detriment, putting off using AT that helps me.
Many programs exist to meet our needs, but they often do so from a charity model, with a “ pity” focus, making the person with a disability into a recipient of services instead of an active, vibrant part of the community who has a legitimate need for supports, assistive technology, and accommodation.
Organizations that operate out of a charity model or service model see people with disabilities’ lives as tragedies. In these organizations, the staff and administration are people without disabilities making decisions on how to best serve the needs of people with disabilities.
Disability pride is the belief that disability is a natural and beautiful part of human diversity. Disability pride stands in direct opposition to ableism. Just as someone can be proud of being a man, woman, culturally diverse, or any other unique identity, one can also embrace their disability as part of their identity. With disabilities, there are barriers and oppression. There are also barriers and obstacles and oppression that result from being a woman, black, or lesbian. That doesn’t mean people with disabilities would rather become people without disabilities. I was recently with a group of colleagues meeting with someone without a disability and he said “of course no one wants to have a disability.” I didn’t even know how to respond at the time, but looking back, to me that is akin to saying “of course, no one wants to be a woman.” While I have experienced discrimination based on disability and based on gender, I do not wish away being a woman or being disabled. They are both part of who I am. I am a proud disabled woman.
There are many benefits to disability pride including: 1) higher self-esteem and self-confidence; 2) a sense of belonging and community with other people with disabilities; and 3) increased belief in interdependence and advocacy for accommodations. Individuals who find disability pride are more likely to be included in the community and successful in their lives, housing situations, places of employment, educational settings, personal relationships, and their community.
I’m ready and working to live in a different way. I have seen the gifts of my disabilities including being part of a greater community of people with disabilities, developing practices that have deepened my faith and connectedness, having a deeper understanding of myself and compassion for others, building my creative problem-solving skills, and building my resilience. My disabilities are a part of who I am and how I live my life. As I learn to love all of myself, I seek organizations that also provide services in a way that does not reflect pity or charity thinking. I work to change systems to build inclusive communities that support all of our gifts and talents. I also surround myself with people who love and support me and other people with disabilities who have disability pride. This is good, lifelong, important work.
For any of us who enjoy cooking and baking, we know that time is a key ingredient of many recipes. How long we need to bake cupcakes for, boil water & noodles for, fry an egg, etc. can mean the difference between delicious and disgusting! The built-in timers on a lot of ovens/appliances are not great to use: text is tiny/hard to read, buttons are cumbersome or inaccurate, the alarm is too quiet or way too loud, etc.
Last year, I started using Siri to tell me when my scones had been in the oven for long enough (usually 16 minutes for my oven). Early on I learned an important lesson: Siri is not always a great listener. When I said, “Siri set an alarm for 16 minutes”, Siri heard “Siri set an alarm for 60 minutes.” There is a huge difference between 16 minutes and 60! Luckily, my sense of smell helped me realize the error and I was able to get the scones out before they burned! I told this story to a friend of mine and he suggested telling Siri “one six” instead of “sixteen”. I tried his idea out and I haven’t had a problem since (fingers crossed).
There are a lot of alternatives to the standard, built-in timers (including voice assistants like Siri and Alexa) and I’ve included a few in this post. If you think you might be interested in trying some of these out, contact your local Disability Network and ask for an AT (Assistive Technology) demonstration. You’ll get to use various kinds of timers and see if they are a good fit/learn about other options.
Amazon’s second generation Dash Wand is out. What potential does it have to support personal independence for members of our community?
The Wand is an example of the use of a technology platform (Amazon’s Echo/Alexa) to reduce the friction in accessing products of all kinds. While the technology is not specifically aimed at people with disabilities, it is usable by people with disabilities. It requires that each PWD examine how to adjust the platform’s capabilities to any specific need for personal accommodation.
In this sense, it is the same challenge that we always have in interacting with this world not designed for our use. But as technology tries to make everything easier to use, some possibilities are also opened up for our community.
I have been using the Wand with my Amazon Echo for some weeks now, and I will try to review some of those possibilities. Frankly, though, only actual use by members of our community will illuminate the real range of those possibilities.
You can activate Alexa, ask questions, make phone calls, listen to your favorite music, run your Fire TV, change your home’s environmental conditions, and so on by voice. Since you can be anywhere in your house when you do any of these things, some mobility and fine motor characteristics become immaterial in controlling a remarkable part of daily life.
The sheer number of skills available for the Echo (15,000 right now) means that you can probably find some to use if you can actually locate them in that disordered app universe of potential. I haven’t been able to find overviews of disability-friendly skills, but there are some in there, especially for making community access easier. This is much the same situation in the use of ride-share systems, where you can reduce the pain points of using public transportation with judicious choices.
There is a portable version of Echo, called the Tap, that can use any wi-fi system and has Bluetooth connectivity. It originally required pushing a button to access, but now has a hands-free method. Take it on trips, use it at work, etc.
The Echo dot is a relatively inexpensive small version that can be placed in any room in your house, linked to your wi-fi, and can be used for all the typical Echo uses, plus things like a local intercom for talking to others in the house.
The Wand’s biggest potential use is in purchasing products that you will use over and over. You will need to be a Prime member to make the best use, and that is $99 a year, a significant cost. The primary reason for choosing this is the two-day free shipping benefit and the ability to choose items as you notice your need for them with periodic shipping of the accumulated items.
The Wand itself allows you to use speech directly to order items that you wish to purchase. Speech ordering seems to work best with those items you order regularly. The other thing that the Wand can do is scan a barcode and place the item in your shopping cart on Amazon. You don’t have to have Amazon open at the time. In either case, the items will not be purchased until you go on Amazon and tell them to process the order. So, you can order items as you think of them and then regularly process the purchase.
I have not yet tried to scan a barcode in a store using my phone’s wifi hotspot yet, though I intend to try that. It would be easier to pick from alternatives in a market and then order that item repeatedly once I got it through Prime.
Not every item you might want will be delivered in two days, only those available through Amazon Prime. This reality has gotten me to change my preferred items to those covered by Prime.
There is also a system for delivering items you would use a lot and regularly. I have avoided using this because I don’t quite get how it works yet. It is called Prime Pantry, and if you order 5 items that qualify as part of a Prime Pantry Box, you get free shipping. I think the idea is to have regular orders delivered to your home that would ordinarily be the sort of thing you would get every week from a supermarket.
There are also other tools for ordering items through Amazon, such as Dash Buttons for products you know you will be using regularly. The buttons are on your home page making it easy to reorder. You can also subscribe to items when your use is very predictable, such as supplements (60 pills, two a day, order every 30 days). They will warn you when they are going to process the subscription and it is easy to change your subscriptions and Dash Buttons. If you choose enough qualifying subscriptions, you get a 15% discount.
These services are very different from the way I have purchased such items throughout my 70 years, but I have become used to the new choices, and I am beginning to understand their usefulness.
These services (at least to the extent that you don’t have to pay for shipping) would allow regular purchases without having to travel to get them. With the barriers to using public transportation and the cost of owning and running a vehicle, such an approach to repeated purchases could be very attractive. Also, with many mobility impairments, preparation for travel and managing grocery bags while using a wheelchair (for example) are wasted time that could be used for other activities.
Thus, such systems can be viewed as steps in expanding convenience and reducing the amount of time that the real ongoing lack of accessibility in American society imposes on our community.
Over the next couple of years, more systems like Echo and apps like Alexa will become more mature. For example, Google Home is rapidly developing as a hands-free voice activated system focused on much the same universe as Amazon’s. There will be more.
It is important that our community understands the abilities of such systems, and share our experiences. It is also important that our community begins to expand those skills used by such systems so that they more readily match our needs, through the development of these skills and apps by members of our community.
In the meantime, decide what you want such a system to do before deciding which one you will use. While all such systems will become more capable over time, the one you choose needs to support your life now even if you expect it will mean more to you in the future. Cost is obviously an important factor in picking a system as well. Costs will likely drop overall. But once you choose a system, you’ll be stuck with it for a while.
To summarize: The two big areas of use of such systems are your personal living situation and those community services which you now use or would use if it was easier to do so. Investigate and research.
And don’t forget to google “voice activated home systems reviews” every once in awhile to see what’s new.
If you come into my kitchen and look on the counter tops, open the dishwasher, and peek in the drawers & cabinets, you’ll find a common theme: most of my utensils & kitchen tools are the OXO brand. From the pizza cutter to the salad spinner, whisk to mixing bowl, and ice cream scoop to prep knives, cherry pitter to angled measuring cup, it’s mostly OXO. Why? OXO tools are easier for me to grip and hold than other brands out there; they make up a large number of the Assistive Technology that I use in the kitchen (stay tuned for Part 2 of this post where I’ll go into other AT I use in the kitchen).
I have Eczema and for me that means I usually have very dry skin; particularly on my hands. Because of my Eczema, I have very little grip on slippery things like typical metal spatulas, can openers, and pizza cutters. Oxo tools usually have grippy, weighted handles that fit in my hand and don’t slip out of my grip. Even on the salad spinner, the button to push to “spin” the salad is larger than on other spinners and is coated in that grippy, OXO coating and the bottom of the bowl is weighted and grippy so it won’t tip over.
OXO intentionally has built their products to be used by as many people as possible. “OXO was founded on the philosophy of Universal Design, which means the design of products usable by as many people as possible. More than 25 years ago, Sam Farber noticed his wife Betsey was having trouble comfortably holding her peeler due to arthritis. This got Sam thinking: why do ordinary kitchen tools hurt your hands? Why can’t there be wonderfully comfortable, easy-to-use tools? Sam saw an opportunity to create more thoughtful cooking tools that would benefit all users and promised Betsey that he would create a better peeler.”“In 1990, after extensive research, hundreds of models and dozens of design iterations, the first 15 OXO Good Grips kitchen tools, including the now iconic peeler, were introduced to the US market. These ergonomically-designed, transgenerational tools set a new standard for the industry and raised the bar of consumer expectation and performance.” (from the OXO site).
Do you use OXO tools? What’s your favorite?
OXO kitchen tools may be available for free demonstration and/or short term loan through your local Disability Network. Search by county to find your local Disability Network and ask them about an Assistive Technology (AT) OXO kitchen tools demonstration.
“You are in a competitive bid area” we were told as we looked for a vendor who would accept Medicare for a family member who needs a walker. (The Medicare competitive bid program began a six-month phase-in period across the country, including rural areas, on January 1, 2016.) We found the one vendor in the area, however, they don’t have the type of walker the doctor prescribed (a 4-wheel – “Rollator” walker). They might be getting some in, but when was not clear.
So one option was to check on loan closets in the area. We also checked the ATXchange.org, and within a day or two a nice looking Hugo Rollator Walker was posted, however, it’s too far away to be practical. The family member really wants to try to get a new walker anyway, as they are concerned about wear and tear on a used device. Strike three on the search!
The next call was to the local Disability Network, the Superior Alliance for Independent Living, to talk with Carolyn Boyle. She was able to provide the name of a technician at a vendor along with the person’s phone number and email address. Unfortunately, they are over 100 miles away, but we probably need to follow-up with this lead and make the trip.
While searching, I also found some helpful resources about how to fit a walker.
Until we can do more research and maybe schedule a trip, we installed a railing in the hallway from the bedroom to the bathroom, which will help during the night and in the morning, before muscles warm-up and become a bit more flexible. I’m working on at least a temporary solution, if the family member will agree and a device can be found at the local loan closet.
Are you in a rural area? Have you looked for durable medical equipment in the past couple years? Thanks for sharing your experience!
As a new mom, I’m pretty familiar with poop–all kinds of poop. And I’m pretty aware of my son’s pooping (or not), when he has a poopsplosion, what he’s eating that is causing what reaction… From the very beginning in the hospital, the medical professionals tell parents about tracking health and bowel movements. I even have the book Everybody Poops on my Amazon wishlist. I want my son to view pooping as something healthy that everyone does–albeit sometimes in different ways. I don’t want him to have anxiety or shame about pooping which can lead to lifelong digestive problems. Yeah there’s a lot of poop thoughts up in here.
In our office, we tend to talk about poop a lot too and bowel programs… and they came up again at a meeting yesterday. I mentioned how I frequently talk about toilet aids when meeting with professionals and teaching about low tech AT for community living. Often, I’m met with nervous laughter. That bugs me.
Rant warning here. Look, we as a society have made poop a taboo topic, but in doing so, we’ve made it so people with disabilities who need AT to assist with toileting, are so ashamed that they don’t ask for or get information about this need. Parents of young adults with disabilities continue wiping their sons/daughters for years when they could be using AT to wipe themselves. What happens when you go off to college or move out on your own and you’ve never learned to wipe yourself? There’s already plenty to learn about budgets, laundry, meal prep. For goodness sakes, people with disabilities should learn about AT for the bathroom when their peers are learning to wipe themselves. Pooping is an important, daily (for many) activity. People need to do it to stay healthy and out of the hospital. Professionals and people with disabilities need to drop the shame game and talk about going to the bathroom–and what devices and supports are needed to go to the bathroom as safely and as easily as possible. People who want to be able to wipe themselves need to be able to get information on devices that can help. People who can’t wipe themselves and need assistance doing so, need information on personal assistance care, safe toileting options, and AT for the bathroom–a note from friends in the know, bidets can be amazing!
Stop with the poop shaming!
Let’s learn a lesson from each other and from what I’m trying to teach my son. Pooping matters. Everybody poops. There are great AT items that can help with pooping and with wiping.
And for the AT info piece–this was previously published in our blog and its worth repeating here:
Many people invent things out of a necessity they have themselves. This was the case for Deborah Tacoma. After an accident where she broke her back, Deborah found she could not twist and reach to wipe and take care of her personal hygiene needs in the bathroom. She did some research and found various items but didn’t find one that fit her body size, arm length and reduced finger strength—so she invented one, the FreedomWand ®. It is available on Amazon.com for $10 less than the FreedomWand website.
In promoting her product, Deborah has talked to many people with many types of disabilities that have trouble wiping and taking care of all their bathroom needs but are ashamed to talk about it with their doctors or others that might have helped them find AT—people are ashamed and suffer for that shame risking skin breakdown, pain, and infections.
The FreedomWand® is an easy-to-use multipurpose, portable toilet tissue aid that can also be used to hold a razor, loofah, or ointment applicator. It has extendable reach of up to 25 inches or as few as 9 and can be taken apart and stored in the carrying bag that comes with it. The bag and wand can fit in a backpack or large purse. Instead of a push-button release which can be difficult for some people, it has a slide button.