Sensitivity to the challenges of disabled people has come a long way, but what if the disability is something you can’t see, that has no effect on a person’s outward appearance? People with “invisible” disabilities are often stigmatized, whether overtly or by implication.

Prejudice in this case is based on misjudging appearances, according to Wayne Connell, founder and president of the Invisible Disabilities Association (IDA). “Saying you look well when you’re sick is prejudice,” he says. “They are ill, they’re not lazy or faking it or liars or any of those things.”

It’s also important to believe people when they say what they can and can’t do. The tendency is to say “you look like you can,” which implies their illness is imagined, says Connell, who estimates that only about 80 percent of people who are disabled use an assistive device. That’s an interesting statistic to apply when you’re tempted to judge whether a person who appears healthy should reserve the use of a disabled parking space for someone who needs it more. “The person you are trying to defend may be standing in front of you.”

Founded as a 501(c)(3) nonprofit corporation, IDA’s goal is to “encourage, educate and connect” people touched by pain and disabilities around the globe. One goal is to help the caregiver grasp the true impact of an illness or condition they can’t see, and to understand that the 40- or 50-year journey of living with a person who suffers an invisible disability is worth it. The other goal is to touch the person with the invisible illness or pain to help them understand that they are not alone and don’t have to be ashamed. Shame comes both from the nature of some invisible diseases, which include mental conditions such as post traumatic stress syndrome or bi-polar disorder that continue to be stigmatized, and from implications—or sometimes even outright statements—that the “invisible” conditions are imaginary.

Connell was moved to found the organization in 1997 based on the experiences of his wife, Sherri, who suffers from multiple sclerosis and lyme disease and has been disabled for 21 years, although the conditions are not obvious when you meet her. “People say I can’t believe you married your wife who is disabled,” he says. “I married her; I didn’t marry her disability. It’s not easy, but it’s worth it.

“The focus of the organization is to look at the common human experience of how people interact to these conditions. We’re not curing a person’s illness, we’re curing the heart. Sometimes what people say hurts more than the illness.” The organization addresses the relationships among people who are impacted by invisible illness, no matter what the illness is, and those they interact with.

The organization’s 60-page book, titled “But You LOOK Good,” helps people learn “the language of invisible disabilities,” and some 24,000 copies have been distributed around the world. Connell says the book can transform a marriage or other relationship. “We had a lady in New Zealand whose husband read the book and brought her tea and biscuits the next day. We have had husbands beg their wives for forgiveness because they finally understood.”

The book helps people know what to say, and sometimes more importantly, what not to say. Phrases such as “but you don’t look like anything is wrong” tend to minimize the seriousness of a person’s condition. It’s also better not to ask someone with a painful chronic condition “How do you feel?” The question puts the person in the uncomfortable position of either having to lie and say they feel fine or to respond truthfully, which can stop the conversation in its tracks. Better to ask “How are you doing?”

Also, commiseration can be fraught with insensitivity. For example, when a person with chronic fatigue syndrome says they’re so exhausted they can hardly make it, it is insensitive to respond “I’m tired, too,” followed by a laundry list of activities that led to the exhaustion. It really is two different states of being.

IDA includes an active social network of 4,000 people (www.invisibledisabilitiescommunity.org), and about 20,000 people a month visit the organization’s website (www.invisibledisabilities.org). The category of invisible disabilities is intentionally broad and includes thousands of conditions such as autism, fibromyalgia, chronic fatigue, multiple sclerosis, diabetes, chronic pain and chemical sensitivities. Basically anyone who suffers from a chronic condition who doesn’t exhibit outward signs of illness shares common experiences and social challenges. “These people will be invisible no more,” says the association’s mission statement. Videos of real people who suffer from various conditions are featured on the YouTube channel invisiblenomore.tv. Connell also writes a well-read blog at www.disability.gov. 

Imagine using a robot in a home-care setting. What tasks would you want the robot to perform? How would you want to interact with it? Would you treat it as a companion or as a machine? What if it made a mistake? These are just some of the questions to consider as the reality of a functioning home care robot becomes more of a possibility.

The Georgia Institute of Technology’s Aware House is getting closer than ever to this technological advancement. Aware House, located adjacent to the Atlanta campus, is a 5,040 square-foot home that functions as a “living laboratory” for interdisciplinary design, development and evaluation of home-based technologies. Enhancements to the Aware House help researchers capture video and other information about how patients might react to various technologies in the home-care setting.

Originally built in 1998 as a test bed for high-bandwidth applications in a home setting, the home is “aware” of its occupants’ whereabouts and activities. Uses of the Aware House have evolved and expanded through the years to include technology issues related to homebound patients.

One recent project at the Aware House involved the use of the PR2 assistive robot provided by personal robot developer Willow Garage of Menlo Park, Calif. The Aware House was used to study how older adults might react to a robot in the home. The test involved a robot performing simple tasks like picking up objects or delivering medication.

What about the emotional aspect of interacting with automation? One study considered the reaction of patients if the robot failed to turn on a light switch. Results of another study showed the need for a robot to face an individual when waiting for a command, even though the robot could function just as well turned in any direction. The study proved that people depend on social cues even when interacting with a robot. Research suggests that people might start treating a robot in the home as a companion and may even be more willing to confide in the robot than a family member or health-care provider.

How a home-care patient would react to a robot is only part of a broad range of research projects at Georgia Tech using the Aware House as a resource. Many projects at the Aware House bring together practitioners of multiple disciplines, including mechanical engineers, computer programmers and psychologists from Georgia Tech’s Human Factors and Aging group.

Work at the Aware House centers on understanding aging and what it means when designing technology for adults to use in the home, including issues as basic as screen size and font sizes. The home also aids in the understanding of what an aging adult will accept and what they won’t, and how they understand information presented to them to improve their health.

“First you have to understand the audience you are designing for, understand their challenges and how to best target their needs,” according to Brian Jones, director of Georgia Tech’s Aware House Research Initiative. In-depth studies at the Aware House include using one-on-one interviews and focus groups as tools. Corporate involvement in the Aware House includes companies such as Verizon, AT&T and Qualcomm that are looking for ways to target the growing pool of potential customers age 65 and older.

In addition to the Aware House, Georgia Tech is also launching a health technologies research project called HomeLab that will use a pool of 550 individuals age 50 and older to test products in their own homes and provide feedback to researchers.

Projects being tested at Georgia Tech’s Aware House encompass mobile applications that can aid health, medication tracking solutions and telemedicine. Sensing technologies inside the Aware House, including cameras, can help researchers study the behavior of individuals in the environment and consider how analyzing activity might be useful. For example, if a person’s nightly bathroom visits increase, it might indicate a need for medical attention. What if the patient sleeps sitting up in a chair rather than in bed? Beyond what can be learned from these observations, how much privacy is a patient willing to give up in exchange for the benefits of home health technology? Would a patient sacrifice more privacy to avoid going to a nursing home?

Exploring the impact of technology on home care requires the involvement of multiple research disciplines that might not otherwise be expected to intersect, but they all come together at Georgia Tech’s Aware House.

“We have many researchers involved, and it’s not just a project to build a smart home,” Jones said. “We use the Aware House as a tool, or as a sandbox where researchers can come together, including engineers and computer interaction specialists. We focus on the human side, too, not just the technology side.”

People who use oxygen can still travel the world, even by cruise ship. Just ask anyone who has been on a Sea Puffers Cruise, which caters to people who use oxygen.

Alaska is a popular destination for the Sea Puffers, as is the southern Caribbean. There have also been trips to Russia, the “Mexican Riviera,” Greece, Italy and the western Mediterranean.

The cruises are operated by Celeste Belyea, RN, and Holly Marocchi, two registered respiratory therapists (RRT) who are also accredited cruise counselors (ACC). Belyea, editor of the Pulmonary Paper newsletter for those with COPD and their families, began the cruises in 2003. The next year, Marocchi joined her to form a company called Get Up and GO2, which operates Sea Puffers Cruises.

“People who use oxygen can still see the world, see different ports, exchange ideas and learn from other people,” Marocchi said. “We start out by finding out what the person needs and what their setup is at home. Then we call their current provider to see what they offer related to travel arrangements, such as a battery-operated portable oxygen concentrator. Every single person’s situation is different, and there are so many factors and options. We talk to each person individually. We want them to have the style and type of equipment they are used to and comfortable with.” Arrangements also include airline travel to a port of departure.

When Belyea started publishing the Pulmonary Paper in 1988, one of the main questions she received was “how do I travel with oxygen?” At the time, multiple oxygen cylinders had to be tagged and taken on each cruise.

Now travel issues mostly involve providing enough battery life for oxygen concentrators. For example, one high-flow oxygen user took along 16 batteries for a flight from Oregon to Rome. (The FAA requires battery power to accommodate a 50 percent longer duration than the expected need based on the travel time and oxygen flow rate.)

Cruises include any necessary accommodations, arrangements and paperwork for oxygen users, and there is no additional cost for the extra attention. There is plenty of backup equipment—and backups of the backups—aboard the ship.

The cruise planners also help with mobility issues. Sea Puffers is a relatively small group on a big ship with thousands on board. Family members or others who do not use oxygen are also welcomed.

An advantage of a cruise vacation for oxygen users is that travelers always have a choice of going on an excursion or of remaining in the comfort of the ship. Families of oxygen users can feel comfortable knowing that, even if their loved one opts out of an excursion, he or she is still being taken care of—and can even get room service.

Cruise ships have fully operational infirmaries, and in case of extreme emergency, travelers can be airlifted off a ship.

The Sea Puffers Cruises also serve as a support group, especially for people who have not previously interacted with a community of oxygen users. “This gives them the opportunity to be with people in similar circumstances,” Marocchi said.

The cruises are educational, too, and the RRTs hold group meetings to discuss equipment options and other oxygen topics.

“Education is empowerment, and these people want to live and get out of the house. Their life isn’t over,” Marocchi said. “Advances are being made every day that can have a positive effect on the day-to-day lives of people.”

Often, a Sea Puffers cruise can help a traveler come to terms with his or her need for oxygen. Marocchi recalled a man who traveled with the group to Alaska but who was self-conscious about using his oxygen in public. “Once he was with us and with other people in our group using oxygen, he saw that it was no big deal. He told us the cruise was a life-changing experience.”

Marocchi remembers him saying, “I have learned that if I use my oxygen, I can do a lot.”

HomeCare, March 2012