In this qualitative research study, the perceptions of two individuals with quadriplegia regarding their electronic aids to daily living (EADLs) were investigated. Face-to-face interviews and observations were conducted in the participants’ homes before and after they obtained their EADL. Thematic analysis yielded several coding categories concerning the impact of the EADL on the participants’ daily occupations and quality of life. These eight new coding categories included: (a) the excitement of anticipation, (b) “the long wait was worth it”, (c) a feeling of safety, (d) “the EADL is my friend”, (e) “hearing yourself constantly asking for help”, (f) “now I can do what I want, when I want”, (g) “I am in my glory!” and (h) spreading the word. Participants provided an emic perspective on the importance of their EADL in improving their overall quality of life.
electronic aids to daily living; quality of life; spinal cord injury; quadriplegia; qualitative
Impairment and illness can result in functional limitations that, when combined with environmental barriers and personal factors, reduce participation in home and community activities (1, 2). Assistive technology (AT) provides a means to circumvent barriers, thus increasing the potential for activity participation. Increased participation in daily activities provides the basis to cope and adapt to barriers, and can enhance QOL (3).
Electronic aides to daily living (EADLs) [formerly known as environmental control units (ECUs)] are AT devices, which allow people with disabilities to overcome environmental barriers and gain independent control of electronic items in their environments (home, work, school, or other).
SCI is a catastrophic life-changing event that initially strips individuals of control over their bodies and their ability to manipulate and control their environment. There are more than 200,000 people with spinal cord injury in the United States, with an estimated 11, 000 new injuries every year. In recent years 88% of those with SCI are being discharged to a home setting and are re-entering their home and community life (4). The primary rehabilitative objective for people with high quadriplegia is providing them with control over their environment, usually with an EADL (5).
Without EADLs, these individuals may be physically dependent on others to complete tasks such as: turning on\ off lights, televisions, stereos, and videocassette recorders (VCRs); opening \ closing household doors and windows; accessing computers; manipulating bed controls; and managing house temperatures. Making these requests for assistance can reinforce feelings of dependency, loss of control, and inadequacy (5, 6, 7). Technologies such as EADLs allow people with disabilities to live more independent lives by providing the means to access and control devices for daily living activities (8).
It is presumed that EADLs also positively impact the users perceived QOL. It is the perspectives of the users that is often missing from AT outcomes research. Currently, it is felt that the best method to obtain perceptions on QOL is to allow the user to describe their QOL in a narrative or interview style (5, 9).
AT research historically has not gone beyond identification of the percentage and reasons for abandonment of AT devices. Only since researchers began to focus on the reasons for abandonment have they looked beyond the technology to the users. There have been only a handful of studies that seek to understand how the person reacts to and benefits from AT intervention.
There is a new emerging trend among rehabilitation and AT professionals, to look at the person's perspectives on the role and impact of the AT in their life (10). The literature supports the theory that the most important perspective of how AT impacts QOL is that of the AT user themselves (5, 9). This study will highlight the perspectives and experiences of individuals with quadriplegia and their personal stories of how EADLs impact their self-perceived QOL.
This naturalistic, qualitative study used observations and unstructured in-depth interviews to explore the perceptions of two people with quadriplegia following a spinal cord injury. They were asked about on the impact of their EADL on their quality of life and their daily occupations.
One man and one woman were chosen from those receiving services at an assistive technology center in the northeast of the United States. Both participants had experienced a spinal cord injury resulting in quadriplegia, were in the process of obtaining an EADL, at the request of their nurse and / or doctor, and were living at home. The population for this study included people who did not have pre-existing conditions that could affect their ability to learn how to use the EADL, including: acquired brain injury; mental retardation; psychological diagnoses; and/or loss of sight, hearing, or speech.
All of the interviews and observations took place in the participant’s home environments. Bailey (11) refers to qualitative research as a 'naturalistic inquiry', where the researcher observes and questions participants in their own environments to discover their point of view on the research topic. Occupational therapy theories also support the concept that context dramatically shapes occupation (12, 13).
Qualitative data were gathered from open-ended questions and discussions during two interviews with each participant. Additionally, observation field notes and reflective notes were made. Pre-formulated questions focused on understanding how Barbara and Joe perceived the impact of the EADL on their daily life and served as a guide for the conversations (See Appendix B). Our conversations varied in length and in subject matter and we pursued related topics of interest as they arose.
The first interviews occurred after the participants, Barbara and Joe (names have been changed) (see Appendix A for detailed descriptions of participants) had been assessed for their EADL and had tried out different styles and features of other aids, but were still waiting for the arrival of their own EADL. The second interview occurred after the participants had received their EADL, had completed general training, and had an opportunity to use the EADL for 4-6 weeks. Each interview was audiotaped and the researcher transcribed the audiotapes. The purpose of audiotaping was to obtain accurate information and to allow the interviewer to focus on the conversation, the participants and what was happening in the surroundings.
A priori codes were created prior to the first interviews based on my experience as a researcher and occupational therapy practitioner working in the field of assistive technology, and a thorough review of the literature (14). This was done to help focus the two interviews and field observations, and to help focus the researcher’s attention during the open-ended discussions. The ten a priori codes were: (a) perceived impact of EADL on quality of life, (b) other daily impacts on quality of life, (c) adaptation to disability, (d) perceived impact of EADL on sense of self, (e) perceived impact of EADL on self esteem, (f) perceived impact of EADL on current health status, (g) perceived impact of EADL on freedom/independence, (h) perceived impact of EADL on community reintegration, (i) motivation to integrate EADL into daily routine, and (j) satisfaction with EADL.
New codes were generated shortly after each interview, using ideas that appeared to be important to each of the participants (14). Every effort was made to recognize the viewpoint of the participants so that their perspective could eventually be expressed to others. Descriptive and interpretative codes emerged from the concepts raised in the interviews, along with each participant’s body language, vocal tone, and emotional response.
During the analysis coding categories were paired with sample quotes from the interview, to help manage the data better and to view it in a more organized fashion. The six codes that emerged from the data after the first interviews were: (a) perceived impacts on quality of life, (b) perceived role of assistive technology in daily life, (c) perceived independence/freedom in daily life, (d) anticipated outcomes related to obtaining the EADL, (e) satisfaction with EADL, and (f) motivation to use/integrate EADL into daily life.
After the first interview member checking was conducted with Barbara and Joe by sharing these six codes to determine if they accurately reflected important issues regarding their quality of life, disability, and assistive technology. Both generally agreed with the coding categories as being the main concepts they wanted to relate.
Further analysis following the second interviews yielded eight coding categories concerning the impact of the EADL on the participants’ daily occupations and quality of life. These new coding categories were: (a) the excitement of anticipation, (b) “the long wait was worth it”, (c) a feeling of safety, (d) “the EADL is my friend”, (e) “hearing yourself constantly asking for help”, (f) “now I can do what I want, when I want”, (g) “I am in my glory!” and (h) spreading the word. Contextual notes as well as personal quotes were organized into these final 8 coding categories (Appendix B).Conclusion drawing and verification were also on going throughout the data collection and analysis process. The whole interview, transcribing, coding, and analysis processes were cyclical and continuous with constant reassessment as more data was gathered.
This study tells the story of two individuals with quadriplegia involved in the experience of obtaining an EADL. It gives their personal perspectives on the impact of their EADL on their daily occupations and quality of life. Throughout the first interviews, while they were waiting for their EADLs, the most common issues they mentioned were those of helplessness, reliance on others, frustration waiting for the EADL, concern for safety, and lack of autonomy in their day-to-day tasks.
Both Joe and Barbara talked emotionally with gratitude and excitement, about the change in their lives once they received their EADL. The most common issues in the interviews after they received their EADL, were a newly confident sense of self and independence, a sense of safety, appreciation of the all things the EADL could do, satisfaction with their EADL, a desire to spread the word about the benefits of EADLs, and positive impacts on their day-to-day tasks and quality of life.
Introducing EADLs to people with spinal cord injury early in their rehabilitation is highly recommended to lessen their dependence on others. Both Joe and Barbara had lived with quadriplegia in the community for years, but each had an individual circumstance. Being introduced to assistive technology so late in life was not ideal but was still very beneficial for both Joe and Barbara. It is unfortunate that both had to wait so long to receive their EADL. It is the hope of this researcher that as clinicians, vendors, and third party payers better understand the profound impact that assistive technology, such as EADLs, can have on the lives of people with disabilities, improved efforts will be made to shorten the lengthy process and enhance services provided. Joe and Barbara experienced their disability differently yet both highlighted the positive role assistive technology, especially their EADL, had on their quality of life and daily occupations.
Barbara (pseudonyms have been used) is a 47 year-old African American woman who lives with her daughter and grandson just outside of a metropolitan area. Barbara has a strong connection to her family and is a proud mother of four adult children, all of whom live in the area with their families. In addition, Barbara’s mother, the matriarch of the family, lives across the street completing four generations of their family in the neighborhood.
When asked about her injury Barbara recalls,
Well my injury happened in 1992 as the result of a fall from a 3rd story porch. I slipped off--well it was loose to--and it resulted in a spinal cord injury, C4-5. My left arm is my strongest, but no use of my fingers. My right arm is the weakest side. I do have some movement but not as strong as the other side.
Barbara and her family were shocked at the severity of her injury and immediately tried to access resources for new housing, rehabilitation, and adaptive equipment.
It has been over 15 years since Barbara’s accident and just this year she is finally able to independently drive a power wheelchair. Unfortunately there is often a long wait associated with getting any durable medical equipment or assistive technologies through Medicaid. Lack of knowledge about equipment, slow reimbursement from insurance, and lack of skilled professionals specializing in seating and positioning were all barriers that limited her moving about independently before now.
Prior to her injury she was working for an accountant. Since her injury she has been unable to work partly because of being dependent on others for mobility and partly because of her minimal efforts to access resources available to support vocational pursuits, such as vocational rehabilitation services and recent employment incentives for people with disabilities. Because of her dependence on others Barbara perceived herself as unable to work and therefore did not pursue employment. Currently she enjoys spending time with her family and hosting family events.
In regards to her experience with assistive technology, Barbara reports,
Well, I have a power – electric – wheelchair to get around in and a lift to get me in and out of my chair, a shower chair. The only thing I do have [control over] is my telephone, with the chin button and being able to use the headset. And I am expecting the [EADL] unit. I have waited for that all of this time!
She also has a semi-electric bed and a new computer, but she is not able to control either of these items because they have not been adapted to meet her needs yet. Barbara is a self-proclaimed “sports fanatic” and enjoys watching and listening to basketball, baseball, and football games on two different televisions. Currently she does not have control over the television, lights, or stereo.
Her apartment is a "handicap accessible" unit under the public housing authority and is equipped with a roll-in shower, accessible bathroom fixtures and lowered counters in the kitchen. The apartment also has a ramped front entrance but Barbara is unable to enter or exit alone because she cannot open or close the door herself and is in need of an electric door opener. At this time she has to leave the door unlocked or distribute keys to her PCAs for them to enter.
She has been relatively healthy since her injury and she relies on her PCAs five hours each day for activities of daily living (ADLs), transfers, meal preparation and feeding, with her mother and daughter providing assistance and care the rest of the time. She is able to get out of bed 3-4 times a week, on average, for about 6-8 hours each time.
Barbara is very excited about getting her EADL. It will allow her to have independent control of her televisions, VCR, her new door opener, her bed, and lights, “Yeah, I think it is going to be a lot of fun [getting an EADL]). I am excited--I can't wait!”
Joe is a 55 year-old man who lives alone in an apartment in a large city. He is an artistic man who likes to travel, draw and paint. When asked about his disability Joe responds,
Well I am a C4-C3 quadriplegic due to a cervical spinal cord tumor. Well, I was first diagnosed in 1974, it was taken out in ’76 and grew back and it was taken out again in ’86. And since then no new surgeries but some decrease in upper extremity function. Mostly weakness before the surgeries, and after the surgeries--paralysis. The first surgery resulted in a C7 level and in 1986 it became a C3.
After Joe’s injury he moved from the suburbs into the city looking for more accessible buildings, easier traveling on public transportation, and accessible housing. He moved into his “handicapped accessible” apartment in the early 1990s, which came equipped with an electric door opener and accessible bathroom features. His long time live-in PCA is like a family member to him. She assists him with his ADLs, transfers, meal preparation and feeding, and then she leaves to work at her other job outside of the house.
Joe is a very resourceful person and is familiar with technology. Being disabled for over 30 years, he has made adaptations in his home to overcome some of the barriers. He uses a lap tray with a beanbag bottom that holds all of his remote control devices and allows him to have control over electrical items in his apartment. With some effort he uses his left elbow to access the buttons on his television and VCR remote controls and the remote switches he has for his phone and door opener.
When asked about technology Joe replied,
I have my computer, my door opener and some touch light switches, where you touch the pad on the table and the light turns on. I have a TV control and telephone control and front door opener on my tray here. I have a lot; I have a cell phone, a cordless phone, and this RC200 remote phone—I need it all simplified!
He began using a power wheelchair 1986 and has been independent in mobility both in his local community and traveling around the world. His travels have taken him across the country and to places like Brazil to visit his PCA’s family. Joe has had a tough past three years because of skin breakdown from a long flight to Brazil in 2000 and has been required to spend more days in bed to prevent further skin damage from sitting. Joe would greatly benefit from adaptive control over his electric bed so he could independently change his position to help his skin heal. In addition, his ability to reach all the switches and controls is decreased when he is in bed compared to when he is sitting upright in his wheelchair, having easier and more reliable access to his devices would promote improved quality of life and independence.
When he is up in his wheelchair he enjoys using his computer with a voice recognition program for online banking and shopping, Internet searches, news, and e-mails. He also recently bought a new adapted passenger van so he can get out of the city more often and start traveling again. Joe is very much looking forward to “getting out and about more.”
Joe is also interested in gaining even more independence in his apartment, such as having control of his bed, lights, and a fan, in addition to streamlining his multiple remotes and switches into one system that will be simple to use and more efficient. Joe is awaiting his EADL, which will allow him to have this greater independence and streamline his current piecemeal systems. He constantly asks, “How soon can I get the EADL?”
During the first interview Barbara expressed a great deal of anticipation about getting her EADL. She started the process to get her EADL in 1999 but then the vendor for Medicaid unexpectedly went out of business. It was not until three years later that a new vendor was found. Therefore, after three years of waiting and ten years of living with quadriplegia, Barbara was finally about to receive her EADL. At the first interview, her excitement was palpable through her upbeat tone and elated facial expressions, “I am expecting the [EADL] unit. I have waited for that all of this time!”
Her PCA was present during much of the first interview, feeding her bites of a sandwich during our conversation. In a reassuring way, Barbara told her PCA,“I am expecting to be a lot more independent with turning off lights and having control of my bed and my front door.”The PCA expressed her gratitude to me for helping Barbara get this new ‘tool’. From her tone it was apparent that it would also help decrease the frequency of requests for assistance to which she would have to respond, and Barbara assured her, “Oh, I think it is going to be a great big help!”
Barbara viewed the EADL as a means to participating in a new leisure activity. Watching television, especially sports, was her most cherished leisure pursuit--she was constantly frustrated that she did not have any control over the television channels. The EADL was going to allow her to change channels herself and she was obviously thrilled with this idea. “I think it is going to be a lot of fun! I am excited! I can’t wait!”
Although over the years Joe had established some methods for using his remote controls the routine was laborious, fatiguing, and frustrating; “I just wish I could use my hands!” In addition, Joe’s upper body had become weaker from “spending so much time in bed and not doing things”. This made it difficult to use the multiple switches and remotes he had set up. Squeezed onto one lap tray Joe had remote controls for his television, VCR, CD player, telephone, door opener, and emergency call system. This myriad of remotes was not only over stimulating but also made it difficult for Joe to access any of them independently with a splint or his elbow. He jokingly commented as I observed his efforts, “I have sharp elbows!”
During the first interview Joe was just as anxious as Barbara to get his EADL, asking numerous times, “How soon can I get the EADL?” The idea of streamlining all of his remote controls and having new independent control over things like his electric bed and fans kept Joe excited and in anticipation of the new EADL. In addition, Joe has always been very interested in technology and enjoys trying new “gadgets.”
After only using the EADL for 6 weeks Barbara remarked with energy “I am ecstatic!” She commented that it was a “longer than usual” process to get her EADL but that it was “all worth it!” Barbara has a reputation for being very patient; and she has demonstrated unusual patience while waiting for her EADL and her power wheelchair. Her daughter popped in and out of our sessions occasionally and talked of Barbara’s patience; Barbara retorted with humor, “Well, raising four children you have to have patience!”
She viewed the EADL as a “tool” for being more independent, especially the electric door opener, “It has been 10 years--slowly, but it’s getting there. I have been waiting to be a little independent, and now--the other day when it was 80 degrees out, I opened the door with my EADL and I pushed myself out the door!” Barbara has a nurse who checks in once a month. She has developed a nice relationship with her nurse and was happy to “show off”, “My nurse saw me, for the first time in my wheelchair outside, and she saw me getting out the door. She was really happy to see me up and out!” Barbara is proud that she has advocated for herself over past years and finally has achieved the independence she has long desired.
Barbara looked on the bright side of having to wait. Originally she had ordered a different EADL with switch activation. Technology has changed over the years and now she has a newer voice-activated EADL,
Yeah, controlling things by voice is much better for me. Oh yes, I like having it speak to me. I am so glad. You want to know why? Things happen for a reason. Before I would have gotten that old one and this one is much better!
The EADL was even better than she expected and she jokingly remarked, “If I knew it was going to be this good I would never have waited patiently so long!”
Putting things into perspective, understanding that the goal of assistive technology is not to cure a disability but to help compensate for the limitations one experiences, she contemplated, “Knowing that I could walk and everything before my injury, compared to what I have now, this is a big step. This EADL is very good!” She realizes that although she will not walk or use her hands as she used to, she can still achieve the type of independence that will have a huge impact on her quality of life.
Barbara lives with her daughter and grandson and receives PCA services. The PCAs come in shifts throughout the day and night, entering through the front door which Barbara was forced to leave unlocked. As Barbara discussed this, before she received her EADL, a look of concern came over her face. Leaving the door unlocked was obviously unnerving to her. Although she has a disability she is still “in charge” as the “mother of the house”. Leaving the door unlocked jeopardizes the safety of herself, her daughter and her grandson, so the new security the EADL will give her is a major benefit,
Especially [having control of] the door, to be able to unlock and lock it, for my personal care attendants leaving in the middle of the night. Right now I have to rely on her to just lock the storm door. Yeah, I will be glad to get the lock, and then I will not have to worry all the time.
This sense of safety was two fold; she would not have to worry about her PCAs leaving the door unlocked and she would be able to exit and enter her home independently. Barbara was eager to have this protection and freedom.
Joe identified with Barbara’s need for a sense of safety. He commented how lucky he was to live in a building with security at the front desk and an electric door opener. When Joe moved into his apartment 20 or so years ago a door opener was installed. Joe sees the door opener as a major tool to his independence, and he also highlights it as one of many tasks able-bodied people can take for granted, “Just to be able to let yourself in and out of your home.”
It amazed me how quickly Barbara took to the EADL. She struck me as a ‘technophobe’--she had never even been on the Internet--so as her therapist, I was initially leery about suggesting something ‘high-tech’ for her. However, she convinced me that her motivation to improve her day-to-day independence and quality of life outweighed her lack of technological skill.
She surprised me by immediately integrating the EADL into her daily routine. She commented, “‘She’ controls the lights, television, bed and the door. Do you want to see that done?” Barbara had even personalized her EADL by giving it a gender and calling it ‘she’. She commented proudly,
Well the EADL has totally become my friend. Like my best friend now! I just call her ‘my friend’!” Do you know what name comes to mind? ‘Jennifer’--all the time--because you started the ball rolling.
Hearing this made me very pleased. I was especially thrilled at Barbara’s new found self-confidence and the spark in her conversation.
Once Barbara received her EADL she was amazed that she had been living without this independence and control for the past 10 years. She was captivated by the power and independence she had suddenly gained after a decade of relying on others, “I never knew how much it could do! Now she is my buddy! I am like ‘Wow!’ All of this time, and I did not even realize what I was missing!”The impact on Barbara’s quality of life was evident in her comfort level with using the EADL during the second interview. She seamlessly wove EADL voice commands into our conversation--it had almost become part of her identity. When asked what occupation the EADL had impacted most in her day-to-day life she expressed,
My TV is my favorite thing to do! Last night I was going crazy back and forth between the Red Sox and the Celtics playoff game! I was like, 'Oh my God, this is great!’
Joe articulated the sense of helplessness and reliance on others that many people with quadriplegia experience. He expressed how a device that aids a person in achieving some level of independence can decrease their need to ask others constantly for assistance. He began to contemplate his life, experiencing paraplegia at age 27 and quadriplegia at age 39, and reflected with wisdom and sadness, “You see, when you have a spinal cord injury all of the control is taken away from you; any little thing you can do to get it back helps.” Joe realized that the EADL had made a big impact on his day-to-day quality of life in just a short amount of time, “It stops you from asking people around you to constantly do things.”
Joe reflected on all of the assistance he requires, as a individual with a spinal cord injury, with mobility, transferring, self care, and most daily occupations. He realized that by not needing to ask “other people to do these trivial little things like turn the light on or turn the TV up or down” he could enjoy people’s company more and feel better about himself. “It doesn't sound like much, 'Just put that light on' or 'Just open the window a little more'. But you hear yourself doing that constantly--and you think, 'I must be a pain in the ass'.”The EADL eliminated this need to constantly ask for assistance and Joe was very grateful.
When discussing issues related to quality of life Barbara immediately described the importance of her family, “Having my family and being able to have my grandchild here. He keeps me very busy. That improves my quality of life.” Barbara lights up whenever her 5-year-old grandson comes in the room, and enjoys watching sports with him. I observed him acting as her ‘little helper’ a lot of the time, turning channels, getting tissues, getting drinks and food, and opening windows and doors. Although this relationship is fine Barbara would rather it was not this way. She would rather that her grandson could “just be a kid” and that she could just be a grandmother who dotes on him. Her grandson was always there during our interviews, and screeched at the second interview when Barbara was “showing off” with her EADL, “‘Yippee! I do not have to do anything for you anymore!’”
She has had to rely on her family for the past 10 years for everything from helping her move form bed to wheelchair to turning on the light. In appreciation of the important role the EADL has taken on in her life Barbara reflected with thoughtfulness, “I just notice how much I don't have to bug people. The TV was the biggest thing. ‘Turn the channel.’ ‘Turn the channel.’” She was also frustrated that she couldn’t always have things done the way she wanted them done. For instance, with the television, “I would get frustrated if I thought I was missing something.” She also felt she was a burden on her family at times, feeling helpless and needing them to constantly assist her, “You feel like you have to swallow a little pride to keep having to ask for help.” Still she was grateful to them and impressed with their patience with her, “I mean they try not to get frustrated with me, but you still just feel that way.”
Using an EADL has allowed Barbara to enjoy her family more and to not have to rely on them as much. Plus her family is happy she is so independent and that they do not have to do so much for her and can just enjoy their relationship as family members, “Oh they love it!” And she added laughing, “They always say, ‘Does it give you your pills too?’”
Having this new independence profoundly affected Joe’s quality of life, “I think it makes a big difference.” Being able to do things on his own terms was important to Joe, and he said with satisfaction, “Well, now I can do what I want when I want.” Similar to Barbara, he mentioned tasks that seem simple and trivial, but his body language--how he straightened up in his chair--showed how proud he was of himself, “It was hot--so I turned the fan on, then it was getting cooler--so I shut it off.” The enormously important difference was that he did it himself when he wanted to do it and when he had the need to do it. Since using the EADL Joe frequently compared himself to able-bodied people when he spoke, “I can adjust the bed, or watch TV at my on pace, turn the fan on if I am hot and turn it off if I am cold. The usual--things you would normally just jump out of bed to do.” The EADL appears to affect his sense of self. Through his tone of voice and body language he portrayed that he no longer felt “helpless” and his self-image was of a person with more “abilities” and fewer “disabilities”.
Barbara echoed Joe sentiments about having independent control over simple and repetitive daily living tasks, on her own terms. She would often spend 2-3 days a week in bed because of pain and discomfort, and before receiving the EADL, Barbara would have her PCA turn on her television to the sports channel, then would need to lie in one position and watch the same channel for 4-6 hours at a time during the day, while her family was at work and school. Granting her this new freedom was very rewarding, “And now when there is a program on that I want to see I am all over it! So that is the best!” Barbara joyfully highlighted the new independence she had with her bed controls,
Oh that is a great function to have! Like my sciatica was acting up, I moved the head of the bed all the way down and relieved it, and I was like, 'Oh this is great!'
Although they both had experienced spinal cord injuries, Joe and Barbara had come from very different personal life experiences. A person’s satisfaction with a piece of assistive technology is key to the integration of that technology into one’s daily life, so that it can play a role in improving quality of life. Both Joe and Barbara were very satisfied with their EADLs.
Barbara’s independence was greatly influenced when she gained control of the devices in her environment through her EADL. This feeling of accomplishment was obvious in her excitement and choice of words,
Oh yeah! I am in my glory now! The EADL has made me feel so much more independent! Especially when I went out the other day, I was like, ‘This is cool!’ I was like, ‘Wow!’ I really felt like I was doing something for myself!
Joe had been using his EADL independently for 6 weeks when I returned for the second interview to hear his perceptions. He said how satisfied he was--his tone of voice and body language spoke to his satisfaction,
Everything is done now to my satisfaction. It controls my bed, TV, lights, fan, window and door opener – just about everything!
After having some level of adapted control previously, Joe was impressed with the vast amount of power the new EADL had, “There is a lot more capability than I thought!” Joe was already anxious to see what else his new “gadget” could do to improve his day-to-day activities and was “reading through some of the functions” when I arrived for our second interview. When I asked Joe about his level of satisfaction with the EADL, he replied with a smile, “The EADL is very helpful and much appreciated!”, more understated than Barbara’s enthusiastic exclamations, but just as heartfelt.
After only 6 weeks of independent use, Barbara couldn’t imagine being without her EADL and stated she “would cry” if someone were to take it away. Barbara was interested to know if other people with her level of disability had such systems and wanted to spread the good word, “I would definitely recommend an EADL--to anybody! I think they are pretty cool! Do they also recommend them for paraplegics?” She even took a righteous voice, stating, “This is the one thing the disabled world should have!”
By adapting his environment and using alternative methods, Joe had become partially independent at controlling many of the devices in his apartment prior to receiving his EADL; “I have touch pads on my lights and my door opener and remotes here on this tray.” However, sometimes the remotes and switches would get misplaced or be placed accidentally out of his reach, “I even have a remote switch for my fan somewhere.”Joe had done his own research and sought out his own resources to establish his adapted home environment decades ago. His piecemeal system of multiple switches and remotes was his attempt at trying to gain control over his environment, “As long as I have some little accomplishment each day.”
Joe was getting weaker as the years wore on and he was having some difficulty accessing all of the different remote controls and switches. People with disabilities often complain that they do not know about all of the technology that is available to help them live more easily and independently. Joe commented with insight on this topic after he had used his new EADL for 6 weeks, “I would have liked to be introduced to the EADL earlier. It would have saved a lot of time and effort. And the computer - I wish I had learned about computers much earlier.”
Like Barbara, Joe also wanted to “spread the word” to people with disabilities. Initially Joe had felt that his piecemeal system was adequate, “I have everything.” He had accepted that he could not have independent control over some items like his bed and windows. But these were very important to him, “If I could open and close my window myself that would be great!” Streamlining Joe’s homemade systems into one simple EADL, which included those items he had given up hope of controlling, impacted Joe more than he thought it would, “The EADL is real nice!” When I asked Joe if he would suggest to other people with disabilities that they integrate technology into their lives, he wholeheartedly agreed,
I am all for it! Learn as much as you can about computers and environmental controls, to have as much control over little stuff - instead of always having to ask people. Having technology stops you from asking people to constantly do things for you!
Disney produced a television show in the mid 1990s called Gargoyles. It's a great show and I'm a big fan. A few years ago Disney started to release the show on DVD. The last release was of season 2, volume 1. That was two years ago. Volume 2 has not been released. Why? Poor sales. So if you should find yourself wanting to support my work, instead I ask you pick up a copy of season 2, volume 1. It's a great show and you might find yourself enjoying it.