Everybody Poops

By Aimee Sterk, LMSW, MATP Staff

the cover of the book "Everybody Poops" with pictures of a person, a horse's butt, a goose, and an apple

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:

the freedom wand device with toilet paper inserted in the grasping end and a hand holding it

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.

Our Small Changes Big Differences kits have FreedomWands® for you to see in-person and decide if they might work for you. The kits also have dozens of other devices to help people with disabilities live in the community. Find the kit nearest you and give them a call to set up a demonstration. Deborah also has a video showing how the product works.

And for what its worth, also from my new parent experience, pregnancy constipation is no joke and squatty potties really do help with constipation and that crew understands that we need to talk about poop–and even have fun with it.

What do you think? Can you help break the poop shaming cycle society has created? What AT do you use or have you heard of that helps with toileting?

 

 

Domestic Violence, Sexual Assault, and AT

By Aimee Sterk, LMSW, MATP Staff

MDRC staff members have been working on a multi-year collaborative grant from the Office of Violence Against Women in the U.S. Department of Justice. Through that work, all of our staff has been learning about responding to, preventing, and connecting to the services and supports available, for people experiencing domestic violence/sexual assault.

People with disabilities experience sexual assault and domestic violence at a far higher rate than the general population and these violations can also lead to disability. As a community, we as people with disabilities need to be aware and active in both preventing domestic violence and sexual assault and in responding to it.

How does this all relate to assistive technology (AT)?

In a variety of ways:

  1. Perpetrators may withhold people with disabilities’ access to needed assistive technology as a means of control.
  2. Perpetrators may monitor conversations of people with disabilities, especially people who are Deaf and use communication devices. This is another means of control.
  3. People with disabilities who experience domestic violence or sexual assault may need access to AT devices emergently as they move to shelters or other spaces for safety. Devices may be left behind and AT/additional personal attendants may be needed to deal with the fact that many times perpetrators are family members or caregivers who people with disabilities relied on for support. Loan closets of devices  and the ATxchange website are potential resources for use of devices while sorting out living situations, accessing services and supports, and making safety plans.
  4. Many shelters are not accessible and need to develop ways to help people with disabilities access AT when they flee a situation.
  5. Sexual Assault and domestic violence program staff may not be aware, or capable of, assisting people with disabilities who have intellectual, processing, or communication disabilities due to their own lack of knowledge and skills. Access to assistive technology can help.
  6. Apps for PTSD can be useful to survivors of domestic violence and sexual abuse. For example, I am a sexual abuse survivor and use Gratitude! for mindfulness and PTSD Coach.
  7. There are apps and devices for safety like Circle of 6 which lets you send out messages to your friends like “come get me” and gives your GPS location. Circle of 6 also can connect you to resources.
  8. Survivors who are Deaf and hard of hearing need to know their rights and the systems of help available. Some communication and relay systems keep transcripts of conversations automatically unless the user specifically requests that they don’t. Perpetrators have also impersonated Deaf survivors through electronic communication methods so shelters and survivors may want to develop codes phrases.

Do you know about domestic violence and sexual assault services in your community? Are they accessible? Have they done an accessibility audit? Are they welcoming and able to serve people with all types of disabilities?

Google Drive for Students!

Text "google" with hearts

By Jen Gosett, BS, CTRS, MATP Staff

In my last blog post, Google Calendar for Students!, I mentioned that one of my first professional roles after I graduated from Eastern Michigan University (EMU) was supporting young adults who had disabilities and were transitioning out of high school to whatever came next for them.  I shared about the necessity of creating and using a schedule and talked about how Google Calendar was a great tool for students with various support needs.  Today I’m writing about my experiences using Google Drive to support students with various needs; specifically those related to organization, cognition, communication/social interactions, memory, and planning.  “Google Drive is a free service from Google that gives you access to free web based applications for creating and sharing documents, spreadsheets, presentations, and more. Because files can be accessed from any computer with an Internet connection, Drive eliminates the need to email or save a file to a USB drive. And because Drive allows you to share files, working with others becomes much easier.” From All about Google Drive.  

Students using Google Chromebooks to access Google Drive

Students use Google Drive to

  • Collaborate on group projects
    • Students can begin a presentation (Google’s version of PowerPoint is very similar), share it with their classmates, and give them access to edit and add to it. The creator of the presentation/document does not need to be online for their classmates to access it; it’s stored in the cloud and can be accessed anytime via wifi/mobile data.
    • For someone who may have support needs related to communication/social interactions, group work may be really challenging.  In a group setting, he or she may have a difficult time understanding why or how their part of the assignment may have been changed by a group member.  Using the “See Revision History” feature, students are empowered to understand when something has been changed and by whom.  Then, using the built in chat feature, students can follow up with their group members about changes.
  • Access work all in one place
    • Abraham Lincoln graphicAnything created in Drive is stored in the Drive account (connected to the student’s Gmail account). Work won’t be lost if a computer dies or a new/different device is used. Drive auto saves everything that was created using Drive via connection with the internet.
    • For students who have support needs that center around organization, this feature is especially useful.  They don’t need to keep track of multiple emails being sent back and forth with the most recent revision because it’s already auto saved in Drive.
    • Also, for students who need supports geared around memory, if she or he forgets what they named a document, they can search in Drive using a keyword to find their work (for example, “Lincoln” could be used to find their report on American presidents).
  • Share work with their teacher during the process
    • For students who have needs centered around general cognition, knowing if they are completing an assignment in the way the teacher envisioned might be a challenge.  Keeping the teacher in the loop from the beginning of the project can be very helpful.  Depending on the teacher, students can get helpful feedback/guidance from their teacher before they officially “turn it in” by inviting them to the project created on Google Drive.  Teachers can then comment/make changes/etc. in real time to support their students.
  • Get support remotely
    • Laptop computer with hand raisedSometimes the supports a student needs can’t always in-person.  When a student invites their Personal Assistant, parent, etc. to their document/presentation/etc., that designated support person can view, double check it, etc. remotely from their own computer or mobile device. This feature can be changed/people can be uninvited whenever needed (for when there is a staffing change for example). Access to “view only” can also be given when limiting access is needed/chosen.

Do you use Google Drive?  How has it been helpful to you? Share in a comment 🙂

There’s an App for That!

a ball covered in app icons

Looking for ideas for apps for that new tablet or phone? There are so many apps and so little time. Where do you start? Here are some ideas, though certainly not everything that could help. I hope it will get you started at least.

What is you are trying to do?

Begin with the end in mind.  For example:

  • Are you looking for a way to communicate? If so what? To whom?
  • Do you want to remember something? Do you need a reminder only in certain locations? Do you need pictures or photos or will text be enough?

How do You Your Access Your Device?

Do you need audio such as Voiceover or TalkBack options? Do you use switches? Would a stylus help? You’ll need to find apps that work with the way you use your tablet or other device.

Built-in Access Features

First, ask if you are using the built-in access features of your device. These are there, free and can really be helpful!

Some ideas for alternative access:Extension stylus on finger from ShapeDad

How Much Can You Spend?

In an ideal world, this wouldn’t matter, but we all have limits. Either you have some funding or need to find some. Check MAPT’s AT Funding Strategy for ideas on funding more expensive apps. Also look for apps that let you try them before plunging in. Make sure you know if an app requires in- app purchases to be fully functional or if it requires yearly subscriptions.

Where Can I Research Apps?

Person's hands on an iPadDirectories

I am sure there are many other considerations, directories, adaptions and tips. I hope this helps you in your search! We would love to hear your thoughts on this!

Special Education: Is A New Future Possible?

A visual-spatial diagram of the Ideo framework for design thinking with many, many concepts; see the links in the caption for detailed information
Ideo.org and The Art of Innovation

In my last post, I tried to make the case that now is the time to disrupt special education because it has become rigid, compliance-driven, bureaucratic, and politically corrupted. In other words, the mission of special education as it was originally envisioned when it began in the 1970’s has been gradually parasitized by the interests of other groups besides the students whose educational benefit was the point of the law. To transform Special Education, we will need to truly innovate in ways that are stable and sustainable.

Any whole-system changes, like charter schools, however individually successful or unsuccessful they might be, absorb many of their assumptions about how education must be delivered from the current system. These remains of the old system doom such efforts to the same slow decline toward which public education as a whole is currently drifting. We need to think about how education should happen much more from scratch.

So, how should we frame our strategy for transformation?

  1. Not just inclusion, but full integration of “regular” and “special” education. There is no organizational quality justification for the segregation of special education from regular education other than outside economic, political, and stigma-related interests. Certainly, students aren’t better off educationally. If the goals of education are the inclusion of all in American society, and the universal respect for individual difference, the continuing segregation of special education is a slap in the face to these very American values.
  2. Making student-directed planning (SDP) the core of transformation. I am a member of a statewide advisory group focused on improving the education of students who are deaf-blind.  There are roughly 300+ students who meet the criteria for this special education eligibility set of characteristics in Michigan and many county and local special education systems have only one or a handful of such students. Often the districts are at a loss about how to approach supporting the educational benefit of these individually unique students. A Federal program (DB Central at Central Michigan University) provides TA and facilitation support to local districts trying to build high-quality supports for their students who are deaf-blind. Their experience is instructive.

    School districts prefer DB Central’s person-centered planning approach to the much more typical mind-numbing compliance-driven IEPC model. The districts, student,  and family come away from the PCP experience with a consensus on support, and relationships that allow meaningful adjustment of the plan instead of conflict. This could be the reality for everyone in school if student driven planning and supports implementation was the center of a collaborative effort.

  3. Universal Assistive Technology (UAT), embedded in student and family control,  maximizing educational coordination, and connecting individual and student groups to the larger community. UAT would be based on supporting the customized learning of each student for each educational outcome. The celebration of Neurodiversity would be a universal as well since the evolution of the use of AT by each student would reflect that student’s particular neuro-developmental pattern in reaching personally useful cognitive/emotional outcomes.

    This dimension of the framework for strategic educational change also means that schools will stop treating AT as a luxury for students and accept that student control over the use of AT and related technologies is a premise of educational benefit, not an opportunity to engage in power struggles.

    All students will live in adulthood as part of a world in which every aspect of their lives is conditioned on the availability, access, and usability of AT and other related technologies. That is, we all use technology as (AT) support for our cognition and mood, all day and every day of our lives. It is criminal to deprive students in special education systems of the same necessary access to supportive technology that is now the birthright of everyone else.

  4. In the same way that Accountable Community Organizations expand the universe of health care by distributing collaboration throughout the entire community to produce mutually reinforcing outcomes, so education needs to dramatically expand the scope of the concept of “wrap-around” to include everyone in the community who can contribute to the education of all of its students, including those now segregated into the “separate-but-equal” model of current special education practice.

    This collaborative model also helps break down the “manufacturing” of education that produces graduates like Kellogg’s produces boxes of cereal.

    A greyscal profile of a human head, with the brain broken into separate departments such as memory department, cutting up fuel (the mouth) and so forth  as you would find in a bureaucracy
                                        The Brain as Bureaucracy:                                       Don’t Forget Those Approval Signatures!

    We have the promise of such an approach in the current assumption that students who aren’t labeled are expected to participate in community experiences including many not sponsored by or paid for through school districts. Why should the expectations be different for students with educational disabilities?

    Memoranda Of Understanding (MOU’s) are common methods of coordination across organizations and resources that pursue different, but complementary, outcomes. Such a system of community networking and mutual respect would help eliminate the factory model of education and promote those values that have always been the best that education could offer.

Happy 4th of July! Celebrate by thinking about how to expand freedom and choice for yourself and your community through AT.

Resources:

Creative Adaptations Spark Innovation

person with cell held to face with thought bubble of a lightbulbNecessity is the mother of invention” an English-language proverb, is certainly true when it comes to technological innovation. People who have disabilities are often the spark as they have the necessity or need to be able to do something and this has led to innovative solutions. Many of these innovative solutions have become technology that everyone now takes for granted.

Historical Tech

The history of technological innovation is full of examples of innovation which started with an adaptation for someone with a disability. Here are just a few examples:

  • Alexander holding device to his earDo you use a telephone? The old landline phones became commonplace a long time ago. Did you know that Alexander Graham Bell invented the telephone in an attempt to better communicate with his wife who was hard of hearing?
  • Do you listen to audiobooks? Thomas Edison saw his invention of the phonograph as a way to open the printed world to the blind by recording book readings.

Some More Recent Tech

Does your car talk to you? “Your door is ajar?” for example. I was looking up a device that had been in the AT inventory for many years. The device was designed to be used by people who were blind by a company called Parrot. After a lot of searching, I found out this company was now making parts for the automotive industry.

At an AT National meeting almost 10 years ago, I was sitting talking with a colleague keyboard on phone with trail from w to K following someones fingerfrom the Alaska AT program after most of the group had left for the day. A man came up and introduced himself. He was really excited to show us an invention he had worked on: “Swipe”. He pulled out his phone and showed us how fast he could enter text on the keyboard. The company’s background was in working on argumentative communication for people who have disabilities.  He talked about the time and effort they’d spent trying to interest mainstream companies in his product and was so excited he had a productive meeting. Within the next couple years, I got an Android based phone which included Swipe!

There are so many examples! For more read this article “How tech for the disabled is going mainstream.

“Companies could look at designing for accessibility as a sales opportunity. Most features that are accessible for the disabled have great value to everybody,” says Donald A. Norman, a former Apple vice-president for advanced technology who heads a joint business and engineering program at Northwestern University.

Sometimes when we talk about Assistive Technology (AT), people think AT is “special” and just for people who have disabilities, and has nothing to do with them.  I’ve always said that for someone without a disability, technology may make things easier or faster, but for someone with a disability it can make things possible and in many cases everyone has benefited!

What technology do you use or know of that was originally invented for someone with a disability?

Google Calendar for Students!

By Jen Gosett, BS, CTRS, MATP Staff

One of my first professional roles after I graduated from Eastern Michigan University (EMU) was supporting young adults who had disabilities and were transitioning out of high school to whatever comes next.  At the time, I was only a few years older than the people I met with and I think it was as much of a learning experience for them as it was for me.  We focused on completing daily life tasks (meal prep, laundry, shopping, bill paying, etc.), finding housing options, researching job postings & prepping for interviews, learning to use public transportation, pursuing continuing education, and meeting & connecting with other young adults in our shared community.  Graphic of a calendarIn order to work on the areas mentioned, a scheduling system or calendar was essential.  Many of the young adults that I worked with had never used a calendar/been responsible for planning their day/week/month before we started working together.

When I think back to my own high school transition (summer & fall of 2003), I remember that I didn’t use a calendar before my freshman year of college and it was a little difficult getting used to it.  In 2003, electronic calendars may have existed, but they were not well used by me or my peers.  To put this period of time into perspective: laptops were still very new & expensive and I only knew perhaps 1 or 2 people who had them (many of us had non portable, desktop computers or just went to the library on campus when we wanted to get online/type up homework).  And at the time, there were no smart phones!  My first calendar/planner was the one EMU handed out at student orientation; spiral bound with a small space for each day to write my appointments in.  Hands writing in a paper calendarDo you remember your first planner/calendar?  Comment what it was in the comments section of this post! 🙂  Flash forward to 2017 and I can’t imagine having to go back to the paper planner system.  I know some people are still very attached to their paper planners (much respect), but I am a convert and an epic fan of Google Calendar!

“Google Calendar is a powerful, free service you can use to organize your schedule and coordinate events with others. It has many useful features, including the ability to share calendars with others and easily switch what is currently being displayed. You can access your calendar from any computer or mobile device as long as you are signed in to your Google account.” Learn more info from Google Calendar Tips.

Google Calendar

Google Calendar became an integrated Assistive Technology support for (some of) the young adults I worked with once they and their support networks leaned how to use it.  From my experiences, Google Calendar is fairly intuitive; use the link listed in the paragraph above to access a free, online tutorial of how to get started with Google Calendar.

Students can use Google Calendar to:

Hand holding a phone with Google Calendar open on it

  • Input their class schedule: Google Calendar can be accessed on both smart devices and desk/laptop computers. If a student uses the app on their smart phone, they have access to their schedule whenever they have their phone on them.  Details such as directions to which building & room the class is located in can also be added.
  • Create reoccurring appointments: Students can create a daily/weekly schedule once and it will appear in their calendar each week.
  • Schedule additional appointments for: Study time, time after class to review notes, time to meet with a tutor/Personal Assistant, etc. Sometimes having their built in time/visual reminder can be helpful instead of having to “just remember”.

Group of people

  • Find a time for groups to meet to work on projects: The “Find a Time” feature allows you to compare schedules of guests, whether you are scheduling a meeting or inviting friends to lunch, to pick a time that is free for everyone. Learn more about the Find a Time feature.
  • Get scheduling support remotely: When a student invites their Personal Assistant, parent, etc. to their calendar, that designated support person can help schedule appointments, review schedules, double check, etc. remotely from their own computer or mobile device. This feature can be changed/people can be uninvited from calendars whenever needed (for when there is a staffing change for example).

Do you use Google Calendar?  What are your favorite features? Comment below!

If you liked this post, check out my next, Google Drive for Students!