Doing Research with disabled Persons

Since I'm on the road a lot on disability portals, I can say that there's a call almost every day to take part in this or that study. Only the countless ePetitions are worse. As a rule, these studies are disability-specific, for example only the visually impaired, only the deaf or only the blind are surveyed.

Relevant Research Topics?

The fact that questions are often repeated is a okay. Whether you find out three times how blind people can find their way better with GPS or write your 20th master’s thesis on Goethe’s depiction of the Orient, the result will probably be the same. Apart from the fact that these orientation studies are really expensive and you can use the money more sensibly, but that's another topic.

But are people with disabilities socially obligated to take part in such studies? I think no. In fact, many studies have the intention of improving the situation of disabled people by providing scientific evidence of problems or examining whether certain measures make sense. Regardless of whether you suffer from the specific problem yourself, you may wish to have it investigated.

But the problem is that science is often an end in itself. This means that the study may be methodically clean, but since the student usually changes to a job after graduation that has nothing to do with the subject of her study, the work ends up as a sample in the university library, where it is probably of no interest to anyone until it crumbles to dust. Student work rarely plays a role in scientific exchange, so that the student's results are usually not included in the scientific knowledge pool. They are not discussed in papers, published in journals, or published as a book, effectively making them lost. In other words, it's a complete waste of time for the study participant, because the fact that his student and her professor are smarter afterwards certainly doesn't solve any of our problems.

Unfortunately, even research projects worth millions come to nothing. The luck of these researchers is the extremely short-term memory on the Internet, because one research project follows the next and hardly anyone remembers that the same topic was researched ten years ago. Apparently it is enough to publish a final report the size of a phone book, which overwhelms most German scientists to translate the findings into concrete products or services. However, since the results are not publicly available either, they cannot be implemented by more powerful people.

The disabled as a research subject

It is relatively difficult to treat someone as a research object and as a subject at the same time. It always seems like these researchers who travel the world and observe exotic tribes in their way of life. You quickly find yourself in the position of the superior who scrutinizes the inferior. A complex society is reduced to folk festivals and courtship dances. Imagine if African researchers came to Germany and presented the carnival or the Oktoberfest as the essence of German society. Most of us would find that dishonest. This is the usual procedure in research.

Requirements

In my opinion, every study/survey must meet the following requirements:

It must be unique. If there was a comparable study recently with a comparable question and clean methodology, the study should not be repeated.
The results must be disclosed. Some students seem to dream of becoming the next John Grisham with their bachelor thesis on "Social Media Accessibility for the Blind". If they enjoy it, so be it, but the minimum is to disclose the results of the surveys so that, as required in point 1, the study is not repeated by someone else. And the bare minimum and a matter of respect is to share the results with the people who took part in the study, if their contact details are known.
The methodology must be clean. I've never done much empirical research, but I can often tell at first glance whether someone has researched blindness and whether the questions being asked make sense. They often don't do this and it is often evident that the researcher has not dealt with the subject sufficiently or that the question is so unclear that it will not deliver any useful results. When a question in an online questionnaire is absolutely ambiguous, there are weaknesses in the methodology that devalue the entire survey. One can correctly object that these are not seasoned researchers, but often young students. But then the question arises as to whether they shouldn't look for a research subject that they can cope with. The supervisor is responsible for quality control, and the student can also look for an advisor from those affected who will draw their attention to gross blunders.

More researchers with disabilities

Unfortunately, as is so often the case, there are too few disabled researchers and scientists in Germany. Curiously, around eight percent of the students are said to be disabled or chronically ill, but only a fraction of the theses have anything to do with disabilities. Apparently those affected have no interest in doing research in this area.

In addition, the scientific field is not interesting from a financial point of view. The rest of the civil service promises relatively secure jobs, and the economy better working conditions. Since many disabled people attach importance to social security, the area of academic research is particularly unattractive for them. Last but not least, the scientific sector is absolutely merciless when it comes to nepotism. Anyone who doesn't snuggle up to the lecturer of their choice early on will be screened out, and disabled people hardly have a chance there. Strangely enough, the topic of inclusion does not seem to be on the radar in science, so that they can ignore the disability rate with impunity.

It would make perfect sense to involve disabled researchers more in these areas. I can't think of anything more absurd than a bunch of healthy people in their prime thinking about how a demented person with rotten bones can live without barriers. Disability simulations are at best an approximation; surveys can only have limited success.

The role of disability associations

Allow me to say a word about the inglorious role played by some disability organizations in this area. The first point of contact for blind research is the DBSV. It should get a good part of his funds from such research projects.

That's nice for the DBSV, but often less so for the blind. Basically, the DBSV has no interest in rejecting superfluous or pointless research projects, especially if they bring in a lot of money or run for several years. On the contrary, from their position it makes sense to attract particularly expensive, complex and long-term projects. There are numerous employed experts in the DBSV who somehow have to be paid.

So that I am not misunderstood, I do not mean the local associations, which often take part in local projects with great unpaid commitment. What strikes me, however, is how often the DBSV is involved in expensive large-scale projects, but does not disclose what grants it receives for them. And it is noticeable that the meaning of such projects is often not revealed, while projects that would benefit a larger number of blind people or that would be significantly cheaper are not mentioned at all.

Let's take GPS again as an example. Most young blind people have a smartphone or a special device with which they can use the geodata for orientation. Most older blind people - and there are many more - do not have such a device and many would be absolutely overwhelmed with it. So we can say: The need for such devices is covered without anyone having to spend a euro of research money on it. There are numerous unexplored areas for this: how to improve near orientation? How to improve injury prevention for older blind people? How can the training of guide dogs for the blind in Germany be improved? It is an open secret that most guide dogs are badly trained.

Of course, the people who decide on such projects don't know that - because they are not disabled and don't know any disabled people with whom they would discuss something like this.

Representation in Studies

Studies with disabled people are always associated with problems. A core problem is the representativeness of quantitative studies.

In the case of mild disabilities, the differences may be relatively small. But as soon as you get into the range of severe disabilities, the range of abilities is so different that increasing the test group does not add much significance. Every severely disabled person is disabled in their own way, every blind person has a very individual system configuration and development strategy for content, so that it is difficult to determine meaningful average values. For someone who cannot move their arms, the situation is very different than for someone who has spasticity in their arm.

There are basically two ways of thinking in research in this area: induction and deduction. In induction I say one is like that, therefore all the others from the same group are like that. In deduction I claim the statistical mean is so, therefore this individual is so too. As I have tried to show above, these approaches are difficult to justify in the case of severely disabled people. Still, we have to resort to it, at least partially, since we have no other option, guessing would be worse. I'm just suggesting that we should be careful in our conclusions.

In addition, it is actually difficult to get together a larger number of disabled people who could be a representative group outside of special institutions for the disabled such as schools or educational institutions.

You can count the number of studies in the field of accessible information technology on two hands. And naturally they are usually so special that they hardly have any practical use outside of a narrow range.

It is most annoying where this data is not published in the first place. It feels like a survey or other inquiry flutters onto my desk every day, but I never hear from the results again. Not even the participants get this information. Doctoral and diploma theses written with great effort disappear practically unread in the archives of the libraries or are sold for fantastic prices. For my taste, this is a form of incapacitation, "You may take part in our studies, but the results belong to us". Incidentally, one reason why I never take part in such studies.