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What is a Disability Anyway?

I’m preparing to write a paper on this project and have been looking back over some of the research we collected and found a gem that I absolutely must share. During the last class we asked the UArts students to take some time to reflect on their experiences in this project and jot down a few thoughts. We gave them open ended prompts such as:

  • what did you learn from this experience
  • what were the difficulties and challenges
  • were there any surprises
  • what did you learn from your partner
  • what did you learn about yourself
  • what tools could be designed to support this project

One of the most insightful comments was written by Kevin Greenland who had worked with the ever ebullient Branden:

If it is attitude that enables or disables (and not the condition of some body part), then how many of us are disabled at times with a rotten attitude? And then by extension – how many of us disable each other with bad attitudes we project on each other, limiting who we each are and what is possible for each of us?

Thanks Kevin for this stimulating insight!

Branden and Kevin in one of their finer moments.

In an Exhibition!

Mitchell Wright checking out the Exhibit

We just exhibited the project at the Philadelphia Center for Architecture! The show is called “Green, Urban and Glocal” (A wordplay on local and global). The show features work from local architecture programs but because the University of the Arts has such a strong focus on “Green, Urban, & Glocal” we were invited into the show (even though we don’t have an architecture program). We put  up 3 posters showing large process photos from this project.

A few key quotes from the posters:

“This project is not about designing particular solutions to individual problems, but rather is about developing a system that empowers individuals with disabilities to solve their own issues.”

“This exhibit shares highlights from our process – unexpected moments where boundaries were dissolved. These are the real “final results,” the impactful ones, the ones that grow the seeds for a sustainable society that considers the needs of all.”

We also put up several other projects in the exhibit. Grad students showed their recent projects where they worked with the Department of Nursing Home Transition at Liberty Resources. The Juniors showed their recent “Benson Park” project where students engaged local residents in Kensington in a design process to strengthen their community by activating their neighborhood park.

 

For those that missed it, the exhibition continues thru March 2.

Exhibition: February 6 – March 2

Opening Reception: February 9, 5:30–7:30 p.m. 
Philadelphia Center for Architecture 
1218 Arch St, Philadelphia

Last Class

We held our last class this past Saturday. I’d have to admit it was a bittersweet few hours. We shared our projects and prototypes with each other but it was all tinged with a sad sense of goodbye. Brandon burst out in the first few minutes “No, it’s not gonna end!” and we kidded that we had a truckload of tissue boxes available for the day…

Presentations at last class

Each team demonstrated their project either by showing a functioning prototype or by showing photos and video of the off-site installation.

Kevin and Brandon led off with their prototype showing wheelchair actuated switches (above) that would turn on and off Brandon’s lamp in his room. The electronics were functioning sporadically but Brandon with his over the top sensibilities later explained his full vision to eventually trigger head banging rock music with a light show and pyrotechnics and girls appearing in bikinis somehow … For now we will all be happy if the lamp turns on consistently … but they expect to continue development of their project. So more to follow…

Next Chiaying showed images and a video of her project installed at Marsha’s apartment. Their project has been in operation for the last 3 weeks. Marsha got out her acrylics and had customized her switches as well as helping with the overall concept development.

Chiaying fabricated her own switches

During the project Chiaying had noticed how much Marsha tended to customize and personalize her own belongings like the arm braces shown below –


Chiaying worked with Marsha to engage these instincts toward customizing to make the switches personalized. See photo below.

Personalized switch installed

The Arduino and a solid state relay were packaged in a plywood box with a plexi cover so Marsha could see the electronics.

Christine and Mitchell presented next. Their project also actuated a bedroom light for Mitchell except it is triggered by a Ping Sensor.

Mitchell actuates the Ping sensor

Then Michael and Joe presented their project. This was a knee actuated switch with an adjustable camera mount (built by moi) that allows Michael to take photos while driving his wheelchair.

And finally Ben and Glenda showed their project, a wheelchair accessory for signaling in traffic when her wheelchair is turning. While the electronics are completed they still have to assemble everything into the bright orange package that Glenda produced with her sewing skills.

At the end of class there was a bit of a food fest while each participant was separately interviewed regarding their experience and it’s impact. Marsha also decided to make a splash by surprising us all with her many obscure talents!

Glenda at her final interview

Surprise! Brandon has a few things to say...

By the close of the class each participant had also made a blog entry which will be posted soon and everyone looks forward to somehow continuing this project in the future…

Completing Michael’s Prototype

Our first mockup was more like a crude 3D sketch but it allowed us to begin to uncover many design constraints by stimulating conversation with Michael. What height should it be, can you see over it, how will you interact with it, when will it be in your way, is it uncomfortable, describe a scenario of how you would like to use it etc

Lots can be learned even from a crude mockup

We found out that the mechanism would have to swing or move at out the way whenever Michael needed to get out of the wheelchair to go to the bathroom, take a seat on a train, or go to bed.  This seems so obvious now but at the time it was not even on our radar and so this conversation was very valuable to us. We also learned that Michael preferred to use his Left eye and so we positioned the camera accordingly.

Positioning the camera to suit Michael

We adjusted the height and also checked for interference with his thigh. I bought a footswitch on a whim from an on-line catalog and we tried it out. Out original plan was to use several switches and have Michael would control these switches with his left hand. Michael REALLY liked the possibility of using his thigh to actuate the camera, so we continued in that direction.

We placed the footswitch next to Michael thigh

Now we had a firm direction but a lot to do. I wrapped Michael camera tightly in saran wrap and built a little box around it and poured a 2 part liquid plastic (Smoothon: Smooth Cast 320) into the box. This plastic hardened around the camera forming an exact pocket for the camera to nest. This would make it easy for Michael to accurately position the camera each time he needed to reinstall it.

A molded pocket to exactly fit the camera

The I had to begin machining alum parts to replace the wood structure and Renshape pieces.

My favorite machine!

Joe worked on the electronics and the programming. We only had a week remaining so there was a lot of pressure.

Joe working the electronics

Nearly functioning

We mounted the servo and completed the structure and soon had a working prototype!

The servo moves a cam down to snap the actuation button on the camera

There were lots of small mechanical details to resolve.  Eventually we had a working model that looked like this:

Back side (user side) and bottom view

We asked Michael if there was a slogan that would be used at this protest and he told us “Free Our People”. The organization behind the protest is called Adapt. Armed with those 2 bits of information a Senior ID student from UArts named Mark Scafini volunteered to stay that night to make a laser cut plaque to embellish and personalize Michael’s camera mount. Thanks Mark!

With the laser cut slogan to personalize it

Now all that remained was to mount the structure and wire it and then drive it to Michael who was patiently waiting in order to make his train to Washington DC! We had to motor in the wheelchair across town to 7th and Market from UArts on Broad St.

Joe proudly motors up Broad St.

I test some adjustments along the way

Experiencing the city from inside a wheelchair can really change your perception.

Joe pauses to consider his options here ...

A few more shots of our journey:

Finally we arrive. Michael was thrilled with our work but he had to race off to catch a train  and get to the protest!

Michael's first moment with his chair mod

Working with Michael 1: Wheelchairs, Cameras and Protest Marches

So Michael B. came to UArts on Sun Sep 4 to work with Joe and me. It’s a bit of a big deal for him to get all the transportation arranged to do this. He also had to bring his son Luke and his attendant Butch.

Butch, Luke, Michael and Joe at UArts (L to R)

Michael loves to take photographs and is going to Washington D.C. in a few weeks to protest for disability rights. He says they will march to the White House. He says laughing that they go expecting to get arrested, but I’m not sure just how much he is kidding. The march is a National Action by a group called Adapt. He would love to be able to photograph the march from his wheelchair, offering a first person point of view of the protest. Unfortunately, Michael had a stroke and so does not have much use of the right side of his body. So he cannot drive his wheelchair and take a photo at the same time as he has to keep his left hand on the throttle/joystick of his wheelchair at all times. So our challenge is to help him figure out a way to accomplish this. Yikes…

We started by just asking him to handle the camera so we could understand that a little better. In the photos below you can see how awkward this is for him. First, the camera is designed for right handed people and he is now left-handed. He cannot reach across the camera body to touch the zoom nor the shutter release button.

Fingers can’t reach all the way across

As he struggles to use the camera he blocks the lens in one position, gets into some really awkward hand positions and then finds a way to use the camera but only with it turned sideways.

reaching the button …  but blocking the lens
awkward!   plus he can’t see the screen
The only way …  is sideways 

So we began discussions to get his input on where he would want the camera to be,how he would use it, and other needs. For one thing he has to be able to get the camera out of his way to get in and out of the chair. We then begin dismantling his chair and measuring spacing around his body.

dismantling chair

establishing clearances

After a few hours in the shop we have something roughed out.

The beginning of the first mockup

Meanwhile Joe has been working on the programming for the Arduino.

First mockup of the electronics

The notion is that we will use a switch to actuate a servo motor that will rotate an arm down onto the camera and press the shutter release button. This is very ambitious and we don’t have much time to actually make it work.

Fingers crossed …

Class 2: photoresistors, dissolving space and the Magic Wand …

Everyone returned for the second class except Michael. He participated so much in the first class that I’m not too worried about him.  So it looks like we have 5 committed participants: Marsha, Branden, Mitchell, Michael and Glenda. Though we didn’t select or filter participants in any way we have ended up with 5 people people that use wheelchairs.

This class started with a review of what we covered last week and then I introduced the “Photoresistor” which is a low cost sensor. It detects presence by sensing changes in light hitting its surface. So the movement of your hand can be detected and allows you to operate switches that turn on devices without needing to touch anything, so it’s a bit magical.

Here’s what a photoresistor looks like:

Photoresistor. Electrical resistance increases with an decrease in light.

Each team wired a photosensor into a voltage divider circuit. While this is not particularly a blog to share the technology it is worth while to see the technology to understand what the challenge is here. It requires good vision, fine motor skills, a bit of logic and some patience.

The Photoresistor wired into a voltage divider circuit

Another view of the circuit

I noticed that some of the participants got up really close to see their circuit so the photo above is kind of a view from their perspective. As design researchers we want to develop empathy for the folks we are studying and really try to see and even experience from their perspective as best as we can. I mean that quite literally and in this case it is curious how beautiful and sculptural the electronics become when viewed up close. The upper photo is the view that we have of the electronics and the lower photo is the view that many folks in wheelchairs have. Quite a difference.

OK, just one more close-up of the electronics:

Photoresistor as sculpture

OK, enough on the electronics … back to the people …

Here’s Branden in a pose I saw him in frequently – head down and on or nearly on the table.

Branden getting into it

Marsha and Chiaying always worked on Marsha's lap

Mitchell working with Christine tends to sit bolt upright

Brigid and Glenda. Glenda is always focused but keeps to her personal space.

The scale of the electronics and the precision required to handle them drew me to photograph everyone’s hands at work. These photos become quite telling not just in terms of required dexterity and precision but also as a reflection of the barriers that are dissolving between people:

Intertwined - Christine and Mitchell

One composition - Chiaying and Marsha well coordinated

Personal space dissolving

Mitchell's big hands dwarf the electronics

Teamwork - Chiaying and Marsha. Marsha leans into it.

Eventually we swopped out the Photoresistor for a FSR (Force Sensitive Resistor) that you squeeze to actuate a switch.

Mitchell debugging a circuit that uses an FSR (the piece he's squeezing)

By the end of class there was quite a sense of accomplishment and the ever ebullient Branden once again could hardly contain himself:

So Proud - Branden holds up his project for the camera

At the close of each class we debrief a bit and here are Glenda’s comments from today:

Mike: “So how was it today Glenda … you came a little late and it might have been hard to step in”?

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Glenda: “Yes and I really wasn’t gonna come, cause I got started so late … the elevators wasn’t working … kinda frustrated and I was gonna go back home … and I said well … I’m not a quitter, i might as well go to class … i’m gonna be late … but … umm …I have to go get my Magic Waandd (laughter)  … so I came to class”.

(Glenda continues) “So today was um really interesting. It took us a little time to get ours working too but it did work. I really can’t wait to start using this, it’s gonna make my life a whole lot better.

A lot of the switches in my house is like high up. So I use a reacher now to turn everything on. My grandson lives with me. So he likes to play with the reacher. Calls it his monster. So whenever I need it I have to tell him “go get the monster” … so um … now i don’t have to give it to him [to play with], he can have it … so I can turn everything on with this. It’s gonna be … make my life a whole lot easier.

Every day now is like a challenge to me. Been in this chair for 5 years. Seems like every day is something different. Even the things I do over and over again. Everyday is like – I did this yesterday but why is it so hard for me again today. So this is gonna be like my magic wand”.

Class 1

This first class was tremendous and I hope I can convey a small taste of the effort, excitement, and consequent joy that we all shared. The tasks were to start relationships, build trust and deliver the technical content. This was facilitated by a gentle humor and by dropping big expectations.

In Class 1 we taught simple circuits, switches and introduced the Arduino itself. In one of those delicious moments of unexpected insight it dawned on me last night that the Arduino was nothing more than a switch. Wow. It can’t get much simpler. OK, it’s a very complex switch, but a switch none-the-less. A switch that can be programmed to close under conditions that we choose. This actually seemed to make sense and be digestable and help to structure the class. Explaining things in simple terms is always a good challenge.

Here’s what the Arduino looks like so that you can see the complexity that these folks are facing:

the Arduino Uno

The class had to start with some paperwork as we had to get approvals for photos but also to establish some baselines regarding familiarity and use of technology for each participant. Dr. Elaine Yuen from Thomas Jefferson University is helping with the research.

Elaine completing a survey with Michael

We started with a bit of discussion about the objectives of this class.

Class discussion

We then went on to circuits. The simplest circuit is a battery with an LED. Just handling these components was so special and amazing that the participants started photographing it!. I knew they were engaged which goes a long way to overcoming obstacles.

Mitchell with a simple LED circuit, Marsha and Branden photographing

Marsha and Branden absorbed and enthralled

We then used jumpers with alligator clips to create an extended circuit that ran all the way around the table pushing the definition of a circuit.

Glenda, Branden and Marsha building a large circuit

This very easily led into switches. Manual switches. Opening and closing the circuit via the alligator clips

Marsha using alligator clips as a switch

Branden watches the Frankenstein switch closely.

And we also did some circuit diagramming. Joe, a student in the Multi-Media program at UArts, was my assistant teacher for the day and he made the diagrams.

Joe at the board

Then everyone was asked to use a breadboard and build a circuit of their own – this is when the teams started to congeal. The UArts students aided where needed.

Branden and Kevin immediately bonded!

Joe and Michael

Michael had a stroke a very years back and so the right side of his body doesn’t work so well. His excitement was overwhelming though at times. We were all shocked when he would blurt out something beyond what had been taught such as “is this like using a variable resistor to control the voltage”? He would immediately look puzzled and say “woah – where did that come from”? It was as though this class was stimulating some parts of his memory that he did not recognize. This was obviously a very smart man with a lot of technical knowledge some of which must be inaccessible to him. This exciting moment was also tinged with the sad awareness that we as a society marginalize capable and intelligent people like Michael everyday. I wonder – if this is just Class 1 how much more I have yet to learn from these folks in the course of this project …

Mitchell and Christine

It took them a while to find each other ... but this is Chia-Ying and Marsha.

Ben and Glenda

By the close of class everyone had used a breadboard and wired a circuit. Teams were formed and each team opened Arduino and ran a very simple program (Blinky). They then modified the program and saw their own results.

We don’t expect anyone to be able to repeat all this but it was simply a first exposure. To calm the nerves I asked each of them to just watch and not expect themselves to remember anything. “Just let it pass thru you. Some little tiny part will stick without trying”. Then we’ll build on that. Fear can be such an obstacle to learning, and there is so much fear around technology and math. These are very brave souls and it will be interesting to see at the next class how much actually did stick …

Oh, Branden was just soooo excited that I have to include a shot showing his boyish joy over today’s accomplishments:

Yo Branden!

And Chia-Ying will hate me for including this, but here is “the timid one” expressing her deepest emotions:

"Say cheese and smile"

The IceBreaker

I received a grant in Feb to work with UArts’ (the University of the Arts in Philadelphia) design and art students to do qualitative research to explore what it would take to teach a  sample of 5 people with various disabilities to program and use an open source micro-controller called the Arduino. Some interesting questions beyond the teaching and learning issues are emerging as this project  continues to shape – can this tool (the micro-controller) really increase a person’s sense of independence, will it continue to be used after we are long gone, and how will working with people with disabilities affect me and my students i.e. how might we be changed…

In terms of recruiting folks for the project there’s been great reception. I have more students than I originally hoped for and more people with disabilities interested too. We all gathered today to meet each other and introduce the project in a small event we called The IceBreaker. Each UArts student also created a demo to show an example of what a micro-controller can do.

Introducing ourselves at the IceBreaker

Only four out of eight people with disabilities showed up … but we continued anyway. The UArts students each did their demo and there were some beautiful moments as I witnessed divergent worlds intersecting.

Michael and Joe getting to know each other

Michael was so curious and a bit amazed that any of us would be at all interested in helping someone with a disability. He stated that before he had his stroke he really only cared about one thing: m-o-n-e-y! Evidently he was quite a successful businessman and I think he said he owned 3 different businesses. He was so genuine and sincere and thankful to us. It will be interesting to see how our relationships develop over the course of the project…

Christine gives a demo to the group

Brigid’s Demo using a Ping sensor and a servo motor

Branden, Marsha, Kyle, Michael B (standing) and Mitchell in discussion

It felt like quite a successful day. The group seems very interested and not too intimidated by the technology. Hopefully everyone shows up for the first class…