Active Living Research: On the Move: Promoting Consumers' Physical Activity in Orientation and Mobility Practice, Using Evidence and Advocacy
Presented July 18, 2006 at the O&M Division session, Bi-annual meeting of the Association for Education & Rehabilitation Of the Blind and Visually Impaired
Mobility = Activity = Participation
We usually consider "mobility" as a way to go someplace, and that certainly is an important dimension of it. Mobility also has two other dimensions that are meaningful in themselves and are the rationale for this study. First, mobility necessarily involves physical activity. Much research in the general population has shown that physical activity promotes good health; research has also shown that on average, people with disabilities get less physical activity than the general public, so it is important from a public health point of view to understand factors that limit their physical activity.
[Note: For this oral presentation, and because a published version is planned, data tables and bibliographic references were omitted. They can be supplied on request.]
Secondly, because one goes someplace in order to do something, mobility also entails what we are calling "social participation," that is, engaging in various types of socially structured activities, whether one does them alone or with others. We are focusing here mainly on mobility outside one's home or, put differently, in the community.
How a community is designed and maintained is what we mean by "socially structured." The community's structure includes its built aspects and its services such as transportation—and even more broadly, its policies that are inclusionary or exclusionary for people with disabilities, reflecting public attitudes; of course public attitudes can also make a difference in less formal ways. Our general hypothesis is that community structure can make a big difference in the stimulus for, and effectiveness of, individuals' mobility, and therefore for their physical activity and social participation.
Those ideas underpin the study we have been conducting for the past year and a half, just now beginning to have analyzed enough data to make this report. Your reactions and questions will help us shape the further analysis. The study interviewed and observed people in four kinds of subgroups whose type of assistive mobility technology (AMT) differs, [I'll tell you the four types in a minute] in order to learn just how a community's features, in this case New York, affect their physical activity and their social participation. Before you object that New York is too unique to draw conclusions for elsewhere, let me explain two points: first, the study has several innovative features that made it imperative to conduct this as a pilot study before venturing to multiple communities; second, New York in fact contains surprisingly wide variation in its features at the neighborhood level, if you cover all five boroughs as we did. There are some quite suburban areas (none really rural, of course).
"Mobility limitations" do not equal "mobility impairments."
This point could seem a little technical, but bear with me because I hope you'll find it is a really useful distinction for applying the findings to public education and policy advocacy. The distinction between mobility limitations and type of impairment was central to how we designed our study.
Here's the problem that we wanted to address: Outside the field of blindness, if someone refers to mobility limitations, the general public and policymakers almost invariably think of barriers facing people who have what are commonly called "mobility impairments" and use wheelchairs, crutches or support canes as their AMTs. The public and policymakers do not tend to think of barriers affecting mobility of people who are visually impaired, nor for that matter, people who are hearing impaired, cognitively impaired or have psychiatric impairments, all of whom may encounter community barriers or facilitators affecting their mobility. We are therefore "crusading" for use of the more appropriate term "motor impairments" to refer to the medically related aspect of what goes into mobility. We are helped in this crusade by the existence of a conceptual framework developed and promoted through the World Health Organization and known as ICF or the International Classification of Functioning, Disability and Health. That framework for studying disability issues clearly separates the physiological or organ-level characteristics, such as visual or motor impairments, from what ICF calls the "activity and participation" factors, which is where mobility comes in. Also, ICF provides a separate classification for the environment as an essential intervening factor in how impairments may affect activity. Neighborhood or community features, as well as the type of technology used for mobility, belong in ICF's environmental factor.
For this study, we believed we could make the point about mobility as an issue for visually impaired people as well as for motor impaired people most effectively by including both groups in roughly equal numbers in the study design. Let me be clear that in this study participants with motor impairments were not also visually impaired—that's one innovation. As an aside, I would encourage more research to include this type of cross-disability design. If done for clear conceptual reasons, it can add systematically to what we learn about needs that are distinctive for each group, and what issues are shared across groups. Not incidentally, that type of study design sits well with funders and we presume, with policymakers at the stage of advocating for community improvements.
Another important point has to do with the emphasis we placed on AMTs as an environmental factor. Our secondary hypothesis for this study was that the type of AMT would in some cases be as important as the type of impairment in identifying specific community factors affecting mobility. Specifically, we wanted to learn how barriers differed among blind and visually impaired people according to whether they are guide dog or long cane users. For participants with motor impairments, the two groups we compared were users of manual wheelchairs and users of motorized wheelchairs.
Methods: Quantitative and Qualitative
I'll be very brief here—generally audiences who are not mainly researchers get interested in details of methods only after they have heard the findings. (That's when they ask, appropriately skeptically: Really?? Who was your sample? How many? How did you get them? Exactly what did you ask them, and so on??) We solicited participants through rehabilitation agencies, consumer groups of various types, including some concerned specifically with physical activities, and Centers for Independent Living. Thus we do not have a randomly selected sample, and I was not surprised when we looked at the demographics to see that as a group the participants are above average in educational level and employment experience. We infer that they are also at the high end of training and resources such as options of where to live that can affect their mobility. While this bias limits the generalizability of the results, it also allows us to infer further that any accessibility problems we found are likely to be more serious and widespread in a more representative group. This is important to understand in pursuing the dissemination and advocacy of the study's findings.
We collected the data in three distinct steps. First there was a telephone survey of 188 people, which we call Survey 1. Its aim was to get preliminary self-reported measures of usual amounts of physical activity and social participation, and of whether their local areas were perceived as mostly accessible or not. We used Survey 1 mainly to sort the participants into groups with high or low amounts of activity, and high or low reported accessibility of their neighborhood. Within those groups, we randomly selected 8 persons each of guide dog users, cane users, manual wheelchair users and motorized wheelchair users. Those 32 people were asked (and all agreed) to participate in an intensive interview and observation session. One (occasionally two) of our researchers made an appointment to meet and accompany each participant while he or she carried out some usual activity, like going to work or grocery shopping, doctor's appointment, etc. The participant chose whether to stay in the neighborhood or to go out, what means of transport, and so on. The sessions were about 2-3 hours in length, participants were interviewed before, during and after the excursion, and we also kept notes on what barriers they encountered and how they dealt with them, as well as on environmental conditions, including crowds, weather and so on.
Finally, all those who participated in Survey 1 were contacted again for Survey 2 (actually, we could reach only about 135 of the original group). Survey 2 was constructed by drawing from the qualitative observation and interview phase; it featured getting more detail on types of community barriers, type of strategies for dealing with barriers, and extent of social participation classified by whether it involved face-to-face activities with others inside the home, outside the home, or email and telephone contact. We also asked about their feeling of independence in getting around, and background of doing advocacy about community barriers. We are now in the "mudpie" stage of research, i.e., where we have masses of data that we can, so to speak, reach into, pat together into mudpies (i.e., initial data tables) and see if they hold their shape (i.e., yield interesting relationships). I'll have time just to give you a taste (forget the mudpie analogy), drawing from Survey 2 data.
General Perceptions of Accessibility
At the most general level, people overwhelmingly reported that their immediate vicinity was either "mostly" or "completely accessible" (versus "mostly not" or "not at all" accessible) (We used the term "immediate vicinity" which we defined as about 10-15 blocks around their home, rather than "neighborhood" which can have variable meanings in NY). That positive assessment hardly varied either by impairment or AMT type: more than 90% of long cane, guide dog and motorized wheelchair users, and about 75% of manual wheelchair users, reported their vicinity to be mostly or completely accessible. Given that, as I'll specify in a minute, the devil is in the details—that is, people report many types of specific barriers—and given that the percentages who reported complete accessibility are much lower (25% for cane and dog users, about 10% or less for wheelchair users), we need to try to explain the generally positive finding. First, we need to remember the bias of this sample toward better-than-average resources and skills, so we might not get such a high positive level with a more representative group, including people who may not have acquired the needed mobility skills or been able to gravitate to accessible areas. (However, we did look at how length of time using AMT related to positive assessment and found no relationship, using a cut-off of five years or less compared to more than 5 years.)
Based on our observations and interviews, it seems that positive responses about general accessibility reflect the importance of the wide array of strategies that individuals use to get around barriers that do exist. Thus, accessibility at a general level is a consequence only partly of what exists out there, and partly the creativity and self-confidence of individuals in dealing with their environment. (I should add here that the ICF also provides for that dimension, called "personal factors" which includes things such as motivation and training.)
Now to Some Specifics
Of the various ways that we could group these results (i.e., various types of mudpies we could create), we began with a grouping related to our initial interest in seeing whether and how the two types of impairments (visual versus motor) and the two types of AMTs within each impairment type, differed in their mobility-related experiences of barriers.
The first grouping concerns items about barriers for which we found no difference among any of the 4 groups: This applied to very few items. I have already reported on one, i.e., that the groups all gave highly positive assessment of general accessibility in their immediate vicinity (although manual wheelchair users were notably less positive) [This points to some ambiguity in what it or is not a notable difference. I won't go into the technicalities now but will be glad to explain if questioned.]
One somewhat unexpected finding was that the groups did not differ in their response to our question about whether crime affects their daily activities—strong majorities, over two-thirds, in all 4 groups said crime affects their activities "not at all." (I wonder whether this is a distinctive NYC phenomenon compared to other areas!)
Three other items that drew similar responses across all groups had to do with certain sidewalk conditions—we found that other sidewalk conditions drew more differentiated responses. A substantial minority of all 4 groups, about 30%, said they had problems with street vendors (that's probably a NY thing more than other places); slightly more, almost 40%, said they had problems with cars parked on sidewalks (that's more likely in the outer boroughs, not Manhattan, and to that extent might be more like many suburban conditions), and finally, about half or slightly more than half of all groups said that narrow sidewalks were a problem for them. This was somewhat surprising, i.e., that the problem applied to people using canes or guide dogs as much as to wheelchair users, and might reflect the often crowded sidewalks of NY.
Next we looked at items revealing differences between impairment types, but not AMT types within impairment. Again we found few items of this nature, i.e., where visually impaired participants differed notably from the motor impaired participants while there were no differences within those groups according to the type of AMT they used. Perhaps the most interesting of these refers to a question we asked about their general feeling of independence in getting around: Less than, although close to, half of the wheelchair users, whether manual or motorized, said they feel "very independent", compared to a much higher percentage of visually impaired persons, about 70%, whether guide dog users or cane users (we are not considering differences of less than 10 percent to be reliable with our relatively small and not randomly sampled groups). It is important to note that most of the remaining wheelchair users said they feel "somewhat independent" rather than "not at all" independent (fewer than 10%). Among visually impaired participants, no one said they feel "not at all" independent.
Another potentially important item that differentiated visually and motor impaired respondents was a question about whether they do most of their activity like shopping, etc. within their immediate vicinity, outside it, or about equally inside and outside their immediate vicinity. Although most people in all groups said they went about equally inside and outside their immediate vicinity, wheelchair users of both types were less likely than visually impaired users of both types to do their activities inside the immediate vicinity (about 30% of visually impaired users compared.to about 15% of wheelchair users). We realize that there can be several explanations for this difference, and that which explanations mainly apply can have policy significance. It could mean that local barriers are more problematic for wheelchair users, or conversely it could mean that they have more available choices around NYC. We plan to look at this result closely in relation to our other data that may give insight into its meaning.
One not-surprising difference by impairment type, given the lack of any type of wheelchair access to most subway stations in NY, is that the use of the subway is almost non-existent among wheelchair users, but is a major means of mobility for people with visual impairments in NY. New York being under almost constant construction or building maintenance, it is noteworthy that problems with scaffolding were cited by substantial minorities (about 40%) among people with visual impairments, whether dog or cane users, to substantial majorities, about 60%, among both manual and motorized wheelchair users.
Finally, there are the items that show a difference between AMTs within one or both impairment groups. From both a practitioner and an advocacy point of view, these items call for careful attention so as not to be ignoring or even exacerbating problems of one group while developing training and accommodations that help another. Because by far most of the findings we have fall into this type of category, and we have not had a chance to boil them down into easily digestible bites, I will be able only to highlight a few examples. I hope that this sampling will pique your interest in following the reports of our continuing analysis of these data.
First, some barriers for which cane and guide dog users gave different responses, (none of these are large differences):
Cane users reported problems with inadequate curb cuts a little more often than did guide dog users, but roughly half of both groups mentioned that problem.
Cane users also reported more problems with inadequate lighting—about 1/3 of cane users but only 12% of guide dog users; And also more problems with noise: 52% vs. 41%.
The order was reversed in regard to problems with puddles or poor drainage, cited by fully 90% of guide dog users compared to a lower but still substantial 77% of cane users.
Next, an interesting difference between types of wheelchair users that drew equal levels of complaint among types of visually impaired AMTs:
This refers to reported attitudes of the public. That problem was found at a high of 70% among manual chair users, but was quite a bit lower, though still significant at around 50% for motorized chair users and for both guide dog and cane users.
I'll start wrapping up with tidbits from the two topic areas that we will be developing, that I mentioned at the start.
First, I pointed to amount of physical activity as an aspect of mobility with implications for health. We found, and are not too surprised, that in terms of a self-assessed report, there is a regular progression across the four groups, from most to least physically active, as follows: guide dog users, then cane users, then manual chair users, and finally, least among motorized wheelchair users. That general finding may not be surprising, but the study will add important knowledge through evidence about little-known aspects of what types of activity those groups typically engage in, and where those activities occur, e.g., gyms, parks, physical therapy offices.
Next, we pointed to another aspect of well-being that may be related to mobility, and that is the usual frequency of social participation with other people. We asked separately about social participation outside one's home, then inside one's home on a face-to-face basis, and finally, by e-mail or phone. We found almost no difference among the groups in the levels of social participation outside and face-to-face inside the home , but a clear difference in e-mail and phone use, reported much more by visually impaired people, regardless of AMT, than by people with motor impairments (no, we can't separate e-mail from phone in these data).
I will end the findings with nuggets from the analysis we have just begun about the "strategies" people use to deal with barriers to mobility in the community. Some of these strategies can be considered negative (for example, postponing or, more rarely, giving up an intended activity) and others as more positive (planning trips in advance, moving obstacles or altering paths to their objective).
Asking for help from strangers was reported at a very high level by all groups, but most by guide dog users (fully 94% versus 82% by cane users), and also about 80% by both types of wheelchair users.
Getting unsolicited help is also widespread across the groups—about 80%, slightly lower among the cane users.
A striking difference shows up between cane and guide dog users in using crowds to help them to know when to cross the street; that was mentioned by a little more than half of the guide dog users, but by only half as many of the cane users (about 25%) and by about 30% of both types of wheelchair users.
About half of both visually impaired groups report altering their planned routes as a strategy, which was used notably more often by manual wheelchair users, and less often by motorized chair users.
Finally, a nearly universal strategy across all groups is to plan outings in advance; similarly widespread, but highest among guide dog users, is going slower or taking more time to accomplish their trip's aims, rather than giving up the aims.
Another frequent strategy was waiting for another time of day to carry out one's trip; this was reported by 70% of cane users but only about half the guide dog users.
I hinted earlier at a conclusion we see emerging from this study. It looks like people's ingenuity and self-confidence in coming up with some kind of strategy to get around barriers to mobility contribute greatly both to their actual activity levels in spite of barriers, and to their giving positive assessments of the accessibility of their local area.
That's great from one perspective, but disappointing from another. The situation poses a challenge for leaders among consumers, service providers and policy analysts: How can they help to sustain, on the one hand, the sense of satisfaction generated by people's individualized strategies for getting around barriers, while on the other hand, encouraging a group-based sense of unfulfilled entitlement to barrier-free community environments. The latter is what sparks people to band together around advocacy strategies to create environmental changes for truly accessible neighborhoods. That, in turn, will support increased mobility, physical activity, and social participation.