This is the first of a number of blog posts on keeping ourselves safe and enabling our return to normal when our lives are churned and overturned by emergencies and disasters.
Although hurricanes and wildfires in the border states have gotten the most press coverage, the Midwest, including Michigan, have their share of regional emergencies and disasters, including flooding, ice storms, wildfires, tornadoes, powerful thunderstorms, blizzards, and so on.
People with disabilities in Michigan share the same concerns for preparation and response that occur in those emergencies that receive more press coverage.
This post is an introduction to these issues. Future posts will cover the issues in more depth.
For our community, emergencies and disasters pose additional barriers and problems to getting ready for, robustly responding to, and ultimately recovering from, disaster:
Preparing for disaster requires a different mindset and a much more serious focus for the disability community. I will use the metaphor of the GoKit to frame the issues of preparation for disasters in our community.
Our community can’t count on our social networks to automatically have the requisite skills to support us during a disaster. We have to work to build in those skills (and the redundancy of those skills) so they are available during the disaster.
Although Emergency Shelters have dramatically improved their accessibility and accommodation resources in recent years, we all know that these are general resources, not necessarily customized to our individual needs. We need to take steps to assure that we have what we need when we need it, wherever we might end up.
Our community, more than most others, needs to think about the organizations and services that we use in our ordinary life and whether those same services are prepared to continue their support in a significant emergency.
We must take responsibility for building emergency preparation and response into our personal networks as a normal topic for discussion and development among our friends and allies in the disability community,
Over the longer term, we must assertively collaborate with emergency response services long before emergencies occur to build both an understanding of our community’s needs and to deepen our community’s understanding of the how and the why of emergency preparation in the regions where we live.
I hope that readers will consider sharing their experiences with significant emergencies, how they coped, and the lessons that they learned as these posts roll out.
Memorial Day has been a time of taking stock since it was created. The holiday has the strength of being recreated every year in a form that reflects the personal histories and connections that veterans, their families, and their friends have with their lived experience, their social networks, and the larger society.
It seemed reasonable to me as a veteran to think about the ongoing importance of personal support in the crafting of freedom and choice in each of our lives on this Memorial Day, the 50th since I first entered Vietnam.
Over time, I have come to see Assistive Technology as far more than devices or single-purpose apps. To the extent that we focus on the small affordances that devices enable, as important as those affordances are, we miss out on the core purpose of AT, which is to facilitate universal access that allows each of us to forge the life we want and not just the life we have been dealt.
To me, that means that social connection enabled by technology is as much AT as an automatic can opener, and, to the extent that our vision of what AT can do extends to all who use it, and not just those of us who see ourselves as part of our common disability community, the use of AT builds inclusion and lasting social relationships throughout our society.
So, one of the values we need to remember on Memorial Day is the way our personal reflections and our personal struggles for choice and freedom must facilitate the building of all our futures together.
Many members of our community have learned to use specific Alexa Skills as AT to solve support problems in their lives. But how do we customize skills to exactly fit our needs? Developers have been able to create “skills” or programs for Amazon’s Alexa assistant for some time. What about those of us who don’t have coding chops?
Many of the Blueprints are focused on family and friend activities. There is also a section of Blueprints for creating stories using various themes. I think that as the number of Blueprints expands, there will be ones that the disability community can use. For example:
There are two themes, one focused on creating information for a sitter, and one for creating information for a pet, that could be easily hijacked to:
Create basic information for a personal assistant about your needs, red flags, locations of important resources, scheduling important tasks, emergency contact info, specific responses to your emergency reactions, and so on. The skill could be easily adjusted to deal with life changes or the unexpected.
Create basic information about your service animal, so that their unique needs can be easily reviewed by anyone who has predictable interaction with the animal. When should the dog poop, how often, what food isn’t safe, what behavior is a red flag, and so on?
There is also a Houseguest Blueprint that could be used to orient care staff to where things are in your house, what to watch out for, how your neighborhood is laid out, where stores you use are located and local travel issues.
I would guess that the number of Blueprints will expand, but if you have an Echo and use Alexa for supporting your independence now, you might want to play around with one or more of the current Blueprints to get a feel for them. If you do, you’ll be ready to use Alexa as a more customized AT device when Amazon expands the repertoire of Blueprints.
There is a Help Page with a short video that outlines how to set up a Family Trivia Game. It also contains information about how to make better use of the huge library of existing skills.
Give one of the Blueprints a try, and let us know how it went!
One of the enduring problems for people with disabilities who find themselves in an emergency or a disaster is the inability of the systems of emergency response to actually help them with the problems and threats they face. Once the emergency has occurred, it is too late to go through the complexities of your personal support system and health care needs. Response systems are largely operating on automatic during the early part of the emergency and they seem incapable of nuance.
Various registry approaches with, for example, power companies have been set up, but they all involve great practical difficulties in actual use not the least of which is the need for updating every time your needs in an emergency change.
There is a system out there that goes some way to reducing these barriers to safety in a disaster for our community. It is called smart911, and its purpose is to enable first responders to know what you need and want while they are responding. It is very flexible and allows for a wide variety of the kinds of preparation you can build with first responders. I would suggest that you work on it a little at a time so that you can more easily think through what you need.
I would scan the “How It Works” menu first. You can find out whether the service is part of your area by entering your zip code. You should also review the Security and Trust section, maybe several times over the period when you enter information. It can be daunting to fill out even if you know the information you are sharing could be crucial to your survival in an emergency.
I live in Ingham county and there is an active smart911 service here, so I have been working on filling our data in over the last week.
You can include just about anything you believe is important to your safety, even for pets and service animals.
Note that the information is only available after you call 911 during an emergency and only to first responders. Smart911 saves about 11 minutes per person in response, which is a lot of time in an emergency. And the info is only available for a short period of time. The service is very popular with users.
Take a look today. We all need support for emergency response.
“One of the things we fail to think about is the fact that when a person is dialing 9-1-1, it can be a very chaotic environment and there could be a lot of panic involved. If they have preloaded a profile that automatically populates for our responders, we have useful information, even if the person cannot relay all needed information to us.”
Modern browsers are gigantic affairs, designed to manage the remarkable variety of content available online, but also designed to do many more things, using a wide diversity of add-ons, scripting systems, plugins, revenue enhancement tools, and so on, ad infinitum. Now that wide bandwidth is more the rule than the exception, this makes some sense. But text-only browsers have been around for a quarter century (see Lynx, the oldest still being used), and they continue to be useful even in our ecosystem of browser behemoths.
I saw an item discussing the release of an up-to-date version of the WebbIE Web Browser 4, from the UK, and the notice reminded me of all the small niceties of using a web browser that only focuses on the text:
The browser runs very fast, even on slow connections.
You don’t have to worry about malware or popups carried in graphic content.
It’s really easy to print the text without having to also print every single graphic chunk that the content creator or the advertiser thought was Very Important for you to see. This is especially useful if you want to use a PDF converter print driver so that you can share the text without carrying along all the graphics.
The Webbie Browser works with free screen readers like NVDA and Thunder (a webbie application screen reader. See the overview and link at the end of the post).
You can do a basic access test on any website simply be comparing what you get in Webbie, and what’s on the screen. Such a test won’t cover all access issues, but it does give you some direct insight into what people who need to use text as the core of their web access are getting from the site.
If you have another good use for a text browser, put it in the comments to this post!
Webbie has a variety of other applications that are text focused and well-maintained. They include the WebbIE Web Browser, PDF Reader, RSS News Reader, Clock, Calendar, Podcatcher, BBC iPlayer Radio and TV programs, and BBC Live Radio. The apps require Net Client version 4, included with the installer.
Until recently, the general approach to paid leave as an accommodation was to allow or require it unless it reached the ADA threshold of an “undue burden”. For example, Federal ADA guidance suggests the following two-factor approach to this threshold:
“Undue burden means significant difficulty or expense. In determining whether an action would result in an undue burden, factors to be considered include —
(1) The nature and cost of the action needed under this part;
(2) The overall financial resources of the site or sites involved in the action; the number of persons employed at the site; the effect on expenses and resources; legitimate safety requirements that are necessary for safe operation, including crime prevention measures; or the impact otherwise of the action upon the operation of the site;”
In a case in the 7th Circuit, Severson v. Heartland Woodcraft, Inc., No. 15-3754 (7th Cir. Sept. 20, 2017 for Illinois, Indiana, and Wisconsin), the court’s decision set a much more specific standard, by saying that several months or an indeterminate length of paid leave would meet the “undue” threshold. Of course, this decision could be appealed, or other Federal Circuits could define this threshold differently. But, it is typical in civil rights law for relatively flexible standards to become more and more specific over time. This very ordinary evolution of law can be seen clearly in special education law and rules decisions, for example.
I think our community has to assume that over time, paid leave as an accommodation will become less and less flexible. We need to embrace approaches that introduce more flexibility in the use of paid leave, and which support more control by us in the use of it.
One way that has been around for a long time is to look at rehabilitation during paid leave less mechanically than, “You are on rehab leave until you are fully rehabilitated.” Individuals who have experienced a work-related injury receive their rehabilitation services at their work site, and even in the actual workstation, they used before the accident. PT and OT, for example, are provided focused on outcomes that are tied directly to what the person did prior to their injury.
Embracing the concept that accommodation should not be just passive support, but could be organized around a more flexible concept of “return-to-work”, Assistive Technology could be a resource for an at-work sequence of rebuilding the old job around the new reality of the disability. This kind of support could be implemented without making any assumptions about indeterminate accommodations or what might constitute the ultimate configuration of AT for a person as they reimagine how they might do their old job well. The person could work into a supported version of their job gradually, by learning to adapt and as the need for accommodation evolved during personal recovery. Customization, always a core of effective AT, could be expanded to include the expectation that the configuration of individual accommodations would change during recovery.
All my life, I have had a fine motor coordination problem with my hands. My cursive writing is illegible. When I was in Catholic elementary school the nuns made me practice my cursive for an hour every day for an entire school year before concluding that I simply couldn’t improve.
My printing is only somewhat better, and if I am in a hurry, it too is illegible. Even my signature shows symptoms of actual brain damage in that my repeated signatures have different numbers of strokes. Computers have been a godsend to me, though not without their problems, too.
I have always simply taken it for granted that I would have a tough time using my fingers for anything delicate. So, I wasn’t surprised when my use of a smartphone was plagued with misses and sliding finger taps, making my use of apps in general and smartphone typing systems in particular fraught with mistakes. I have to double-check everything, even content I have created many times before. I also have a terrible time using the same amount of pressure with my finger each time I do so, often producing no result or one that shows I pushed too long.
Entirely separately, I got tired of wiping the greasy finger marks off my smartphone every morning and decided I would try using a stylus to reduce the grime. I assumed I would have as much trouble with the stylus as I did with my fingers-maybe even more.
I was wrong.
There was a vast difference in the quality of my input when I used the stylus as compared with my finger. My error rate dropped very noticeably when I used the stylus, making my smartphone use more enjoyable and productive.
So, If you have trouble with fine motor tasks and it shows up on your smartphone, you might want to try a stylus too.
You can get styluses in bulk for about $.25 each or you can get better quality ones almost anywhere. The link below is to the Amazon page for styluses that show you the enormous variety and broad cost points for these products. Check to make sure your choice works with your device.
There is a universal design approach to handling the barriers of fall and winter, but the reality is that it requires real customization and thought long before the barrier appears. Since it is early fall, I thought I’d summarize the universal design approach before expanding the possibilities with a social support approach I ran across recently.
If you have the luxury of designing your home from scratch, you can do a lot to dramatically reduce the need for removal, and to prepare for the snow that will inevitably accumulate. Even if you rent in a high snow area, there are still things you can do:
“General Preparation And Supplies
Stock up on non-perishable food – high calorie is more efficient
Stock up on prescription and over-the-counter drugs
Stock-up on water; if an emergency is expected, fill up containers and bathtubs.
A first-aid emergency kit; supplement it with any special items you need.
Batteries (special ones for health gadgets too)
Battery powered radio; hand crank is good too.
Means for communication: Most phones today require electric to work; make sure you have an old, no-frills phone that needs no more than a basic phone land-line connection. Cell phones will work if you can keep them powered and if the service isn’t congested.
Blankets – plenty
Matches and/or lighters
Snow shovel, snow pusher, ice chipper or snow blower – smaller shovels lift less weight are easier on the back
Needed supplies in good working order – as if they might have to for 7-14 days.
I wish I didn’t have to add this, but in some cases this is important: have personal protection, something with which you can defend your home and protect your family should that become necessary.
Supplies for pet needs too.”
These recommendations are useful for any emergency loss of community travel and use.
You will need to customize your approach to removal as well. There are lots of options if you prepare, and almost none if you wait until the snow has fallen. Have your system in place long before flakes fall. I’ve included two core links for this issue below, but the blog that published those linked posts contains a wide variety of additional home-focused frameworks for successful accommodation.
Similarly, there are variations for other barrier and trash removal, though again they must be customized.
As an adjunct to universal design approaches, I describe below a framework which I believe would be an important enhancement to your preparation, based on a social support model.
I attended one of a series of the meetings for the creation of an Age-Friendly Plan for Lansing Michigan that included a discussion of how to manage the removal of snow, grasses, leaves, and trash. The discussion reminded me of the ongoing, seemingly insoluble social problem of such removal by persons with disabilities that make standard removal a problem.
There is a common set of barriers and practices in all municipalities and rural areas that make clearance of these barriers to movement for people with disabilities problematic:
Automatically devaluing the clearing of barriers if the beneficiaries of clearing are PWD
The use of fines and other sanctions if clearing is not done by PWD themselves. This often necessitates expenses by people who are already poor, sometimes at a premium cost since PWD “have no other choice” but to contract for private clearing or face fines.
The use of disability access parking spots and curb cuts as storage for large snowfall, on the assumption that PWD won’t be using them anyway.
Requiring self-transport of hazardous materials for annual collection when PWD can’t use any transportation to do this. This requires someone else to do it, and all the coordination that entails, or it requires ignoring the hazard.
And so on…..
These are all barriers that define removal as the total responsibility of the person who happens to have the barrier on their property, regardless of property ownership. This is true even when the “trash” is a tree that fell from city property onto private property, as occurred during the ice storm in 2013 in our local area.
The person on the private property was threatened with fines unless she removed it, something that was impossible because of her disability and her poverty. A solution was negotiated to resolve this, but the rules weren’t changed or modified to prevent this wrongful sanctioning in the future.
The proposal in the Age-Friendly workgroup (which I think is a good one) is to make support for such barrier removal a part of an integrated volunteer use system that would cover many neighborhood issues that are infrequent. This idea is one thread of a general proposal to make volunteering and volunteer work easier throughout the range of volunteer activities in the greater Lansing area.
I view such a proposal as a form of Assistive Social Technology (AST) in which community supports provide an ongoing solution to infrequent access issues, along with other neighborhood issues that are infrequent but need resolution. Potentially, there is both a digital/mobile aspect as well as the more obvious social one to such activity.
Such a “model” is already being done by some local people either through existing social relationships, spontaneous generosity, or deliberate local block organizing to assure that both older people and people with disabilities get support in removal. Rather than create an official program which will not change the low priority given to removal of barriers in a short term emergency, building a volunteer community effort where removal is a part of a general ongoing response to local need is a much better solution.
(I am going to try to develop the idea of AST for a future post.)
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!
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.