Teammates: Heidi, Kristin, Sarah, Connie
The first thing that was apparent upon meeting Heidi and her husband Kyle was their open spirit. They were eager to welcome us into their home and tell us about their life—both the struggles and the joys (they have three happy pets: two lizards and a polydactyl cat). Heidi was diagnosed with limb-girdle muscular dystrophy type 2B (LGMD2B) in 2000. LGMD2B is a progressive disease caused by the absence or mutation of dysferlin protein. Because of this, atrophy and subsequent weakness occurs in primarily the muscles of the shoulders, chest, upper arms and lower legs. Over time, the degeneration may spread to the lower arms and upper legs. The result of this muscle weakness and the muscles’ inability to repair themselves adequately causes extreme fatigue after performing daily tasks.
Because LGMD2B makes it difficult for Heidi to get around, she mainly dresses for comfort and accessibility. This means she wears dresses the majority of the time because they are the easiest article of clothing to put on and take off and have the best maneuverability for performing everyday tasks. Once she finds a style that fits her needs, she tends to buy multiples of the same item in bright colors that match her “flamboyant yet classy” personality.
However much Heidi enjoys a little pizzazz in her dresses, she expressed the desire to be able to wear pants again. She related that it has been awhile since she was able to maneuver a pair of pants, and even with her husband’s help it can be more trouble than it’s worth. For pants to be an option again they would need to be flexible, easily taken off and put on, and comfortable for long periods of immobility in a wheelchair.
In order to ascertain how we might be of assistance in creating a pair of pants to meet her unique needs, Kristin and I visited Heidi and Kyle at their home. Since Heidi has lived with LGMD2B for 15 years, she has engineered unique ways of performing various transfers and dressing. She has discovered that moving backwards into a locked knee position gives her the most stability. In the case of bed to wheelchair transfers and ascending and descending stairs, she must first support herself on her hands and knees. However, over time this has caused her some pain in her knees, especially since the majority of the time she is wearing dresses and therefore lacks padding to protect them.
The opportunity for scraped knees is especially present when Heidi must ascend and descend stairs. Unfortunately, this is something she must do whenever she wishes to go out as she must climb a flight of stairs to leave the house. She and her husband have developed a method whereby she locks her wheelchair in front of the stairs, reaches out with her left hand to grab the railing, and locks her knees in place. Her husband then helps her lift each leg up to the next stair as she pulls herself with her arms: an ordeal that leaves her exhausted by the end. To descend the stairs she repeats the process in the opposite direction.
Although a pair of pants would not completely remedy the tiring process Heidi must undertake to go about her day, she lit up when imagining such a pair. “I would LOVE to wear a pair of pants!” she exclaimed. And so we have our work cut out for us. How can we refuse her, this woman who decides to count her blessings every day rather than complain. Besides, she makes a mean ratatouille chili!
It may not be immediately apparent what an occupational therapy, engineer, and design student have in common. However it has not taken me long to realize within the past two weeks that the most important unifying element between my teammates and me is a drive to analyze, create, and solve. The beauty of our partnership in finding a clothing solution for Heidi is we have all been trained to approach these functions from different angles. Each of us has a unique background which will enable us to gain valuable insight from one another over the coming weeks.
For instance, although I feel confident in my ability to build rapport with others, analyze problems, and think of solutions, I had to start at square one when it came to learning the basics of design. Our second day together we performed a garment deconstruction exercise to see how complex the process of creating an item of clothing can be. The pair of pants my team was given to deconstruct was pulled apart at the seams, had its stitches counted, and otherwise scrutinized for the better part of an hour (I may have been overzealous during the seam ripping, as I broke the head off the seam ripper in the first ten minutes). Although this exercise was likely elementary for the design students, I was amazed at how much detail had to go into creating the pants. The pattern had to be cut just so, assembled in just the right sequence, and every type of stitch had a precise function to accomplish.
When we visited Heidi at her home to better evaluate her needs I felt back in my element. I knew how to perform a task analysis on the activities we observed, what questions to ask, and how her limitations in movement might affect our future design. The next day when we came together again I was eager to see how we could apply the information we had gathered to our task of planning our design. Kristin (design), Connie (engineer), and I sketched the process of different activities Heidi might have to engage in while wearing the item of clothing. From these activities we made a list of variables and user constraints, created a framework to explore their relationships, and identified essential requirements the garment would have to conform to. Through sharing our ideas and collaborating with each other we identified the core requirements for our first prototype: durability, flexibility, ease of maintenance, and ease to don and doff.
As an occupational therapy student, I will take any chance to get some hands-on experience. So when Heidi arrived later in the day, I was happy to apply what we had learned about taking measurements. However, having never measured another human before, I was thankful to have Kristin and Connie there to correct me if I faltered in my technique.
Although we are only in the beginning stages of creating our first prototype, I am already amazed at how energizing it is to be part of a team with so much zest and creativity. As an engineering student, Connie is adept at skillfully considering and analyzing the details of our problem and the solutions we propose. Kristin has a wealth of knowledge about design options and a keen analytical mind to effectively apply solutions. I am driven by my passion for identifying client-centered solutions that have the potential to enhance one’s self-efficacy, self-concept, and quality of life. Having the opportunity to be part of this team and develop a skill set I would otherwise lack is invaluable to my development as a future occupational therapist. I am grateful to my teammates for valuing my ideas and for all they have taught me in such a short time.
As an occupational therapy student, design comes up as a discussion topic in class more than you might think. For example, when teaching a class about orthoses my professor told a story illustrating how function cannot be the only criterion for orthotic fabrication. She gave the hypothetical example of a man who sustained an injury to his hand. As part of his recovery, he was required to wear a hand and arm based orthosis. The orthosis was masterfully crafted to hold the man’s hand in a position that would maximize function and minimize the potential for post-surgical complications such as contractures. However, upon his follow-up appointment with the occupational therapist it was discovered the man had not been wearing his orthosis. When questioned, the man explained he felt the orthosis made him appear weak and that he would rather “tough it out” than wear it. This example illustrates the importance of aesthetics in creating a functional design. A design is only as useful as the consumer deems it to be.
In the past and even into the present day, persons with disabilities have often been expected to fit a “one size fits all” mold when it comes to design. Historically, one wheelchair design was expected to meet the needs of every user when in reality each physical disability may require features that are quite different. Similarly, clothing was too often chosen to cater to ease of caregiver use rather than according to the particular preferences of the individual wearing them. Even today, clothing options that meet the needs of those with all abilities are considerably lacking.
Instead of being able to freely choose clothing that both meets a need and allows the individual with a disability to express his or her personal style, a choice must often be made between aesthetics and function. Such a problem might seem trivial until it is considered how often we depend on our clothing to communicate something about ourselves to others. We choose different clothing depending on if we are going on a date, to a job interview, to the gym, or out to brunch with friends. Thus clothing is an important part of our self-expression that is really not trivial at all.
The task for each team at Open Style Lab is to view aesthetics and function as being of equal importance. It is not enough to design an item of clothing that merely functions. Most of the consumers working with each team have found some way to work around their disability when dressing. In doing so, they have often had to sacrifice or diminish their style and self-expression. For example, Heidi can no longer wear her favorite pair of pants which were described to us as a pleasing autumn orange with a patterned leaf design. This is due to the difficulty in donning and doffing them during dressing and toileting. Instead, Heidi now wears dresses the majority of the time because she finds them easier to manage. In other words, they “function” better. Although she has quite a few dresses she likes, she desires the option of wearing pants. Creating an aesthetically-pleasing pants design that caters to Heidi’s strengths rather than avoids her weaknesses would help her increase her feelings of self-efficacy. In addition, this option in her wardrobe would expand her opportunities for making meaningful choices for self-expression.
Having students of engineering, occupational therapy, and design along with the consumer in each team has proven to be ideal in tackling such a task. Every student offers a valuable perspective according to his or her background. We have each been trained to evaluate problems in a certain way. In my group, we like to call Connie (our engineering student) our “closer”. This is because as Kristin (design) and I (occupational therapy) might become distracted by our own ideas, Connie brings us back down to earth by telling us what we really mean in practical terms. With her experience in design, Kristin has many ideas about what may be both functional and visually appealing. As an occupational therapy student, it has been drilled into me that the definition of a functional design is not only one that works in objective terms, but one that is acceptable and meaningful to the client. However much expertise each of us brings to the table, the most important person in our team is Heidi, the consumer. Next Saturday we will have our first prototype ready for Heidi to try on and critique. No matter how wonderful each of us may think the design is, it is worth nothing if it does not appeal to our consumer. We look forward to expanding both our repertoire of ideas and Heidi’s wardrobe!
WEEK 4: Posting from Designer & Engineer
Reflection on my experience so far on being involved in a user-centric design/making process for a client with special physical needs
Team Heidi (Connie Liu, Sarah Spencer, and I) is working to design Heidi a pair of trousers that will increase her independence by being easy to don and doff with one hand. Heidi lives with Muscular Dystrophy, which causes muscle mass to deteriorate, making daily tasks such as toileting extremely difficult and time consuming and nearly impossible to do without the assistance of her husband, Kyle. He is extremely helpful, and the two of them have a supportive and loving relationship. Because he works during the day, Heidi states that she limits her intake of liquids because she doesn’t want to risk having an accident while she is at home by herself. These pants could afford her the extra time she needs to transfer herself to and from the toilet independently.
From my experience so far, I view designing for a client with special physical needs as relatively similar to creating a design for someone without them. My primary goal for user-centered design is always to create an empathetic design, so it is just a matter of taking all of Heidi’s physical challenges, pain points, and other constraints into consideration. While I cannot fully empathize with her situation, conducting client interviews and observations as well as my team’s body-storming activities (i.e. physically walking through her process as it was explained to us and observed during the first home visit), we are able to approximate what her experience might be like. Heidi’s activities have become so limited that any improvements to the clothing fastening system could make a huge difference. Having said that, the design goes well beyond fasteners: Heidi’s personal style, fabric preferences, and wheelchair design are also being taken into account. All of these factors aid in designing with empathy.
Heidi lives with her husband and son in a parlor-level condominium. Heidi is confined to a wheelchair, and their building is not handicapped accessible at all, which prevents her from being able to leave the apartment without Kyle’s help. When she does leave the house, Kyle helps her crawl up the stairs from their apartment to the building’s front door.
Kyle and Heidi have made their own adjustments to the apartment itself and have installed an accessible shower that includes a seat. They also added a kitchen counter where she can sit in her wheelchair and prepare food. Because she does not have much physical sensation, it is difficult for her to know when she needs to use the toilet in a timely fashion. There is a portable toilet and a transfer board next to her bed.
Our team observed her toileting process by herself and with her husband’s assistance so that we could design the most efficient fastening system. We noticed the following challenges:
- Because of the time constraints she faces once she does realize she needs to use the toilet, Heidi states that she often will forgo wearing pants at all while at home by herself.
- When she does wear pants, they are generally pajama bottoms/elasticized pants. The elastic in the waistband gives out over time, and there are no other fasteners on her pants.
- She has muscle weakness in her arms and legs and fatigues really quickly, which limits the kinds of fasteners that can be used in the design.
- Once she has finished toileting, it is difficult for her to pull her pants back up.
These challenges are addressed in the design of the first prototype. Placing the zipper at an angle makes it easier to operate with one hand. There are two neo-dymium magnets at the top of the zipper to help hold the fabric together and prevent bunching when zipping them back up. Finally, using paper engineering techniques a fabric lining is folded flat that allows the top of the pants to expand for ease in doffing. There is a thumb loop at the bottom of the zipper so that she can straighten the fabric out when donning the pants.
Heidi will user-test the first prototype tomorrow. I am very much looking forward to her feedback. This project has been extremely rewarding thus far, and I am eager to see how the design evolves from here, based on the results of the initial user testing.
Open Style Lab has been a valuable experience in designing something new. My previous background is in product design rather than clothing design, so Open Style Lab has introduced me to a new type of design.
Currently, my team and I are at the prototype stage and are working on testing our clothing fastener concept with our client Heidi. We are also working on designing patterns and deciding on final materials for the pants that are suitable to Heidi’s preferences. In addition, Heidi has very specific needs that introduce design constraints to the design of the pants. For example, she is wheelchair bound most of the time, and in order to exit the house, she needs to crawl up the stairs. She also needs pants that are comfortable to live in because she is often in bed or lounging in the house. Heidi finds most of her pants uncomfortable and hard to don and doff. She prefers clothing that is more comfortable, easier to handle, and withstands the daily stresses of wear. With these constraints, we had a solid set of parameters to define our design.
Working with our client Heidi has given me new insights into the lives of those with muscular dystrophy. It is inspiring to see the optimism with which she faces all challenges. Her husband is also incredibly supportive and makes sure all her needs are taken care of. Heidi leads a life very different from mine, and learning about her habits and daily challenges has helped me develop an empathic approach to designing for her. I was able to learn about how muscular dystrophy affects her life in ways I wouldn’t have understood otherwise. For example, day-to-day tasks like using the restroom and climbing the stairs are made into time-consuming ordeals due to the weakness in Heidi’s legs. She also has trouble leaving the house because even accessible toilets are not accessible enough for Heidi. It still takes about 30 minutes to use public restrooms, even with assistance. In addition, being out and about tires Heidi easily, making it more difficult to perform certain tasks during subsequent days, such as cooking or cleaning.
Given these challenges that Heidi faces, my team and I took on the task of making it easier for Heidi to be more mobile. She is often housebound because of the energy it takes to be traveling around, but by saving energy on simple tasks such as donning and doffing her pants when using the restroom, Heidi will have more energy to do other things and experience more mobility and comfort while being out and about. With this goal in mind, we set out to design modified pants and underwear for Heidi.
Working with such an interdisciplinary team to design for Heidi has been very valuable for this design process. With the different perspectives coming from our various backgrounds, our contributions to the team are diverse. The design of Heidi’s wearable solution is influenced by each of our experiences: Kristin plays a huge role in defining the materials and designs to use, Sarah provides valuable insight into Heidi’s needs and how we can integrate that into the clothing piece, and I help with the technical aspects of creating the design to be functional. These contributions all played their part and were valuable to designing our first functional prototype to test with Heidi. We hope to learn a lot during our first prototype testing session in order to continue iterating and improving on our design.
After four weeks of preparation, Kristin, Connie, and I had our first prototype for Heidi to try. Ultimately, we want our finished pants design to be accessible, quick to don and doff, easy to maintain, comfortable enough to live in, and contain attachable underwear. However for this first prototype we focused on the first two design requirements. We did not include the attachable underwear component because this piece will be dependent on the main closure system of the pants. Therefore our primary goal for our first user test was to gather feedback from Heidi on the effectiveness of our closure mechanism design. This is because the traditional front zip and button closure is the design component that most limits Heidi’s ability to wear pants.
For the purposes of the first prototype we altered a pair of polyester blend pants. To meet Heidi’s specific needs, we had decided on creating zippers on the sides of the pants angled towards the front. We believed this would offer the best angle of pull and the least amount of resistance when operating the zipper. Although we were fairly certain this would work best, we decided to also prototype a non-angled zipper that ran down the side of the pants. A thumb tab was included at the base to allow the fabric to be made taught before zipping. At the top of the zipper we also added a magnet closure which we thought might aid in the zipping process.
Another important aspect of our design was including a means for the waist of the pants to expand once unzipped. To accomplish this we tested two different materials. On the right side of the pants we used a thicker material with additional interfacing, cut in such a way so that it would open up like a fan when the pants were unzipped. We used this material with the straight zipper design. On the left side where we created the angled zipper, we used a thinner, more elastic material which we hypothesized would fit our design requirements the best.
Right side with straight zipper, thumb tab, and thicker waist expansion material.
On Saturday we decided to perform user testing at Heidi’s home rather than the Open Style Lab facility. This was due to the fact that it would have been very difficult to simulate Heidi’s context at OSL and it would have been impossible for Heidi to don and doff the pants in the method she is accustomed to doing at home. As Heidi tried out the pants, the weaknesses and strengths of our first design became very apparent.
First, to our surpise, Heidi had great difficulty with the angled zipper and reported the straight zipper was much easier to use. Second, we discovered the thicker waist expansion material was superior because the thinner elastic material was more likely to get stuck in the zipper. This was contrary to what we originally thought would work best. Heidi was able to use the tab at the base of the zipper independently and with ease. She also said the material allowing waist expansion made the pants much easier to don than her other pants that simply have an elastic waistband. Most importantly, this aspect of the design allowed her to pull up the pants with only two weight shifts rather than her usual three to five. Due to her susceptibility to fatigue, energy conservation is vital. With less exertion required to don and doff pants, more energy can be available to engage in other daily activities.
From our observations and talking with Heidi, we came away with some important adjustments to our design. First, it was clear the straight zipper with the thumb tab and thicker waist expansion material was the best closure mechanism for Heidi. Second, although she liked the feel of the pants at first, the polyester blend became a little too warm for her by the end of session. Heidi showed us her most comfortable pair of pants which are a spandex and cotton blend. Therefore for our next prototype we will be using a similar material. Third, we saw the need to design a higher back for the next pair of pants to account for Heidi’s range of movement. Fourth, Heidi told us it is fatiguing for her to grip and pull material, so for our next prototype we will create pull tabs for the zippers and a loop on the inside of the back of the pants. Fifth, we found the magnet closures were unecessarily cumbersome and so we will subtract that element from our next design. This last alteration will also enhance the washability of the product.
Back at OSL and with a better idea of the most effective closure mechanism, we began to prototype a means to attach underwear to the pants. We found cutting the sides of the underwear and attaching them with snaps to the waist expansion material on the pants was effective. We were all very excited by this because we had been struggling to figure out how to attach the underwear while optimizing the functionality, accessibility, and comfort of the design. Of course, we will only know if our excitement is truly merited when in two weeks we again consult with our expert, Heidi.
Underwear attached to the waist expansion material via snaps
WEEK 6: IDEA SKETCH FOR THE FINAL PRODUCT
WEEK 7 & 8: Changes from the first prototype & Mentor Feedback Session
After our first user testing with Heidi we came away with some changes to our initial design. First, we discovered straight rather than diagonal zipper closures running down the side seams of the pants were most effective. We also gained a greater understanding of Heidi’s material preferences. For our first prototype we had used a polyester blend material which was loose and lightweight. However, after Heidi showed us her favorite pair of “comfy” pants—a cotton and spandex blend—we decided to use a similar material for the second prototype. In order to enable ease of donning the pants, our design has evolved to incorporate more pull tabs in order to reduce fatigue from gripping the zippers and fabric. Our final design will also include a higher back due to Heidi’s wheelchair use. One element we subtracted from our initial design was using magnet closures at the waistband above the zippers on either side. We found these did not work with the design and that they reduced the wash-ability of the pants: an important design requirement expressed by Heidi.
One of the design requirements we have had most difficulty with is finding a functional and accessible way of creating detachable underwear. In the final product the underwear would need to be securely fastened so as to not bunch up or get in the way during donning or doffing. Most importantly, the underwear would have to be securely integrated into the closure system of the pants so the two elements may be donned and doffed as a unit. After our first user testing, we had found a way to use snaps to attach the underwear only to conclude this method was not as structurally sound as it needed to be. For our second user testing, we decided to try sewing the underwear into the pants in order to assess comfort and functionality of the unit.
While we had conducted the first user testing at Heidi’s home, she and her husband came to the Open Style Lab facility for the second user testing. We wanted to see how easily the pants could be donned and doffed in a public restroom: a main concern for Heidi and her husband. We were able to see firsthand the barriers and great effort it took to complete a toilet transfer in a public bathroom. Kyle, Heidi’s husband, provided assistance periodically in the transfer process. Heidi has communicated to us that doffing the pants is typically easier than donning, because the latter often requires numerous weight shifts to pull the pants back up after transferring back to her wheelchair. Typically, fully donning the pants once she has transferred back to her wheelchair takes 4 to 6 weight shifts each for the underwear and pants. This time Heidi only needed to perform two weight shifts (one to each side), prompting an immediate response of, “that was the easiest time I’ve ever had putting on pants.” When asked what made it easier, she related the expansion allowed by the zippers and the underwear and pants acting as one unit greatly expedited the process.
Later that day team Heidi was able to meet with three of our mentors (Sue Watkins, Jason Rizzo, and Dino Kasvikis) to discuss our design status and process. We described how our design had evolved from the first prototype but communicated our continued struggle to find an effective way to make detachable underwear. We described how we were considering permanently attaching the underwear to the final prototype to ensure structural integrity and comfort. However, the mentors encouraged us to explore new means of making the underwear detachable and offered ideas we had previously not considered. As our team decided to outsource our design to a seamstress, we spent the rest of the day and the following week problem solving the most effective way to design the detachable underwear in a manner that would be accessible for Heidi. This coming week we plan to test different mechanisms of attachments with Heidi to assess her preference and the accessibility of each fastening system.
Although we are feeling the pressures of this week before the final showcase, we are deeply thankful to the mentors who have freely given of their time and who have encouraged us to seek the best solution possible. We are also grateful for Heidi and the entire Open Style Lab team who have continually inspired and supported us through this process.
Team Heidi high-five.
Connie Liu (engineer), Kristin Slater (design and technology), Sarah Spencer (occupational therapy). Photo credit: Alice Tin
In my experience, there is usually one of two feelings at the conclusion of an intensive project: relief or renewed drive and energy. I am sure I speak for all the members of Team Heidi when I say in this case, we all felt the latter (if in doubt, look at the picture above). Even as we approached the final week with some aspects of our design still to be finalized, none of us were wishing it was over already. On the contrary, our drive was even greater to make sure the final product would meet Heidi’s needs and support her independence.
If you have been following these postings, you will know our biggest design question was whether or not to make the underwear detachable from the pants. So, to answer your “did they or didn’t they” question I am sure is burning in your mind: No. For our third prototype we had experimented with using hook and eye clasps to attach the underwear to the pants. However, during user testing it became apparent very quickly that having detachable underwear was a greater risk to excess energy consumption than the alternative. This was due to the fact that the friction created between the two items of clothing during transferring left a risk of the underwear becoming detached in the process. This caused Heidi to have to exert more energy through weight shifting as someone assisted to reattach them. Additionally, if Heidi were alone in this situation, she would not be able to reattach the underwear on her own while wearing the pants and so would have to completely doff the pants in order to reattach them. Therefore the detachable underwear had a greater chance of reducing, rather than supporting, her independence. Most importantly, having detachable underwear was not a priority for Heidi. All these factors led us to the final decision of attaching the underwear on the final product.
We had our final pants design outsourced to Zoya Designs in Somerville. Zoya created a beautiful pair of pants for us from our design and the materials we had chosen according to Heidi’s preferences. Kristin attached the underwear to the finished product. Heidi was very pleased with the feel and breathability of the fabric and the versatility of the style. Mentioned in the last blog post but worth mentioning again, with the underwear and pants as one unit Heidi was able to save a significant amount of energy in the donning and doffing process. Instead of having to perform 4-6 weight shifts to each side for the underwear and then for the pants (8-12 weight shifts back and forth cumulatively), Heidi only had to perform 2-3 weight shifts in total. Hearing Heidi say, “wow, this is so easy!”, was the best reward we could have received, and we were eager to share our design at the final showcase.
As intimidating as public speaking can be, the most difficult part of preparing for the final showcase was thinking of a product name. Our labors produced a seemingly never-ending stream of pant puns, such as “Au Bon Pant”, “Pant Pal”, and “Indepantant”. These all amused us greatly, but for obvious reasons they failed to capture the essence of our design. After hours of puntificating, one of our OSL fellows, Tobias Froelich, casually proposed, “how about Duet”? We instantly agreed on the name because of how it captured the style and purpose of our design. It described the style because of the underwear and pants acting as one unit; and it described the design’s purpose of working in harmony with our client’s body to support her strengths so that she could be more independent. (Or, might I say, “indepantent”?)
One of the most valuable results of the showcase was the opportunity to discuss our design with a greater number of people after the presentations. Many people were surprised how big a difference such a simple design change made in Heidi’s ability to don and doff the pants. Others were intrigued by the versatility of the design in that it could be applied to a variety of materials and styles. Another OSL fellow suggested the potential benefit of these pants for individuals in a hospital setting due to the ease with which they may be donned and doffed.
Heidi was not able to attend the final showcase, so we visited her in her home the following evening to present her with the final pair. She expressed to us, “this has made me see there are more possibilities. There are things I can do that will make my life easier.” Her positive response and the interest we received at the showcase made us see the potential for the general application of our design. With some research into these areas we hope to determine whether making this design accessible to a greater population would be of true benefit in supporting others’ independence and style.
Over the past 10 weeks we have gained a greater understanding of the importance of accessibility, function, and style in design. We would like to thank everyone who made this experience possible: our mentors, all of the OSL team and fellows, our sponsors, and everyone who took the time to see our final products at the MIT showcase. We would especially like to thank Heidi for being the single greatest source of inspiration. You made this experience a true joy.