Chapter I – Definitions, theory, and reality

Introduction

Can someone truly argue that social right movements are facing an identity crisis? What does it mean and why do I argue that forging such an identity is necessary in order to become a successful political force? In the following chapters, I will try answering these questions, moving from the particular to the general. In doing so, I am going to utilize the disability rights movement in order to illustrate how a missing identity can hinder the formation of powerful coalitions by marginalized groups to advocate for a common cause.

First and foremost, however, let me tell you something about myself: Back in the day, I was pursuing a doctoral program at the University of Texas, Austin when I first became interested in the social context of disability – in an attempt to find reasons for and answers to marginalization, segregation, and oppression. Such categorization being based on commonly accepted norms, beliefs and attitudes; while the latter is being amplified by the way we use language.

For example, I used the words disability, handicap and impairment as synonyms, without realizing the theoretical and practical implications of those terminologies and the ongoing discussions addressing issues arising from an assumed social constructed use of them. I did not, however, immediately associate a disabled person with somebody who has a physical handicap. I would have rather explained the word as being a temporary inability to participate in a certain action. Further assuming that everybody can be disabled at any certain point of time and most likely tied to some form of 'specific' activity. Perhaps one could state, for instance, that not everyone can climb over a 6 foot high wall, which we then could call an 'environmental disability’. As a matter of fact, disabilities can range from minor to severe functional impairments, including mental ones; the latter oftentimes assumed to be particularly challenging.

In addition, to those rather terminological concerns, I always believed that a disabled person is not any less ‘normal’ than an able-bodied one, even though my use of language may have implied such an attitude. To my surprise, given that I just had begun to familiarize myself with the topic area, it appeared my assumptions were somewhat in line with a conception that is commonly known as the ‘social model of disability’.  In my opinion, one of the best definitions that addresses and discusses possible issues surrounding this topic. It advocates for an attitude that is based on the belief that real understanding of marginalization and segregation can only emerge if one exposes oneself to the ‘unknown’, all the while keeping an open-mind and overcoming the angst associated with disability and the existential fear which arises when one’s inherent values and beliefs are challenged.

Disability studies as an academic discipline can lay a foundation to accomplish those goals mentioned above, but the topic is far broader as it could be comprehended from a single angle. In my opinion, one needs to integrate different fields of study, such as sociology, psychology, humanitarianism,
and the likes. Kinesiologie or sport management can also give some answers and could be utilized to gain a better understanding of disability, but more so in the context of the social rights movement. Let me give you an example how in sport, disability has been socially redefined:

In Spring 2011, I took part in a sport sociology online class at the University of Texas at the Permian Basin. We were to read Coakley’s (2009) book ‘Sport in Society’, which had a so-called ‘Barriers’ sections, where sociological topics were related to people with disabilities. As an example, Coakley explains how beliefs about age and disability have changed with modern sport. Disabled people were, up until the Industrial Revolution, perceived as being dangerous in diminishing the positive values sport is supposed to promote. Thus they were isolated and barred from being active. People tended to define impairments as being ‘different’, compared to ‘normal’ people. Coakley further describes the struggles of athletes in the Paralympics, which was initially created by German Nazi’s to ‘heal’ those people. It was not until the end of the Cold War that the Paralympic Movement gained acceptance and was institutionalized. Currently, the Paralympics is an integral part of the Olympic Movement and does shape our understanding of disability; although this does not imply that this is necessarily and entirely positive.

What is disability?

In societies around the world interpretations of terms are influenced from various angles, leading to a variety of definitions and influencing the subject matter it describes in different ways.  The word ‘disability’ has been segregated throughout history into medical, functional, and social models, all of which I will briefly explain in the following.

Please note that terminology is important at this point in time, because I will be referring back to those and it helps to comprehend the ideas and objectives of the disability rights movement.  In general, and as far as other marginalized groups are concerned, language has and will continue to impact political debates about change, and thus it is important to have a quick overview if we want to move from the particularity of disability to a generalization of oppression.  As mentioned earlier, I do not intend to have you as a reader get lost in details or to elicit an academic debate, ideally I want to create awareness about the difficulties of disability, specifically in context to the social rights movement.  However, it is goal to lay the foundation for a healthy debate about our societies’ approach in handling topics about marginalization based on the concept of socially constructed groups.

Firstly, the medical model towards disability could be understood as an approach of objectivism; which means that physical or psychological parts of a person with a disability are identified and compared to an assumed normality.  It seems obvious that the biggest issue becomes objectivity as a prerequisite itself, given that it is very subjective, depending not only on one’s experiences and beliefs, but also on one’s cultural and social background.  Therefore, such a model might overlook the person in itself, marginalizing him solely as being a function of his disability. I would like to argue that in certain circumstances such an approach might be appropriate.  We may imagine a situation where medical help is needed and wanted by the patient.  Though, what if this doctor is emotionally attached to the patient?  Do we still assume or want that the medical professional is detached emotionally?  Obviously, a difficult call and a bias that will become evident for most issues that will be addressed. There are always two, or even more, side. Nevertheless, I would like to argue that with an open mind and understanding that language or terminology more specifically doesn’t cause harm, attitude and inflexibility does!

Secondly, the functional model is oftentimes applied and is fairly similar to the medical one, yet with a more limited scope.  Whereas the latter can include any physical, mental, or emotional ‘condition’ – irrespective of whether it is chronic, acute, or temporary – the former regards disability as a long-lasting inability to perform a certain function (in relation to a productive activity).  Whereas the scope for the medical one appears more appropriate, given that a disability does not mean it is forever, the latter brings the environment in as another variable (i.e. productivity).  However, one’s ability to produce something, in certain circumstances, is not necessarily linked to a person’s functional ability.  Technological advancements or support systems, for instance, may as well allow two individuals to achieve similar results, regardless of one’s assumed ‘superiority’ to perform a certain act.

Regardless of which definition one prefers or applies, this book is not meant to criticize the one or the other, but to inform and, sometimes, to provoke.  The medical model may have its place and time, even though it primarily focuses on body parts rather than the ‘whole’ person.  The main flaw is its underlying assumption that something has to be fixed. Assuming, hence, that it is broken without considering that sometimes the environment is what should be fixed.  From a functional perspective, training, education, or therapy is supposed to minimize the impact of impairment, allowing the ability to meet societal productivity measures (aka remediation).

Despite their differences, both models have one distinct similarity: they are founded on a cultural and societal classification system that separates ‘normality’ and ‘abnormality’; disability being part of the latter.  This, in turn, elicits strong criticism from disability advocates leading us to another model: the ‘social constructivist view’.

Disability, from this perspective, is man-made and wouldn’t exist if we as society wouldn’t separate ‘normal’ from ‘abnormal’.  The blame ought to be environmental and the belief that there are always ways to avoid letting a disability become a handicap.  In other words, disability is part of human nature and a person is much more than a mere collection of his parts.  Each and every one of us has purpose and can be part of society.  We should try to empower each other, to allow the utilization of our strengths, to understand that we all are worth participating in this world, because every one of us has his rightful place.

The different models outlined above will be used throughout and shall help to create a better understanding of why theoretic exercises are necessary, even though they may distract us from deeper issues.  We should always keep in mind that getting lost in academic discussions may as well be harmful for the actual cause to change society’s attitude towards oppression and segregation.  Theory is important, but sometimes our focus is too specific, for instance solely concentrating on the issues with regards to disability rights. Therefore, I will try to assume some kind of parallelism between the disability rights movement and others, advocating for marginalized groups: to identify similarities, to integrate past experiences from other social right movements, and, perhaps, forging a much stronger and overarching identity that can win the fight against oppression, all together.

Who is disabled?

We might want to argue that terms around disability, and definitions more in general, are socially construed.  Though definitions appear indisputably necessary, I would like to proclaim that in the case of disability, they are only necessary because society resists accepting that it is in fact a ‘normal’ state of human nature.  Thus, until society doesn’t subconsciously accept disability as being part of our lives, we may have to continue this exercise.  Please note, however, that defining disability is not merely an academic act; it is more a global concern to define policies, to set a scope and extend how legally adequate assistance can be allocated.

In addition, it is a way to socially anchor disabled people into society and create acceptance and understanding.  Widening the scope of definitions, in general, can be used as an indicator that society tries to include and provide equal opportunities.  The stigmas the word disability entails might carry negative connotations, but we could also say that clear definitions are indeed supportive to lay a foundation to form a common identity. Consequently, we might even boost an individual’s self-esteem, as being per definition part of something bigger, while society understands through such better what this means, in a corresponding manner. An example of a widely accepted definition for disability has been issued by the United Nations (1983), which is commonly used by activists to enhance opportunities for people with disabilities:

Impairment: Any loss of abnormality of psychological or anatomical structure or function. Disability: Any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range considered normal for a human being. Handicap: A disadvantage for a given individual, resulting from an impairment or disability, that limits or prevents the fulfilment of a role that is normal, depending on age, sex, social and cultural factors, for that individual.  Handicap is therefore a function of the relationship between disabled persons and their environment. It occurs when they encounter cultural, physical or social barriers which prevent their access to the various systems of society that are available to other citizens. Thus, handicap is the loss or limitation of opportunities to take part in the life of the community on an equal level with others.

The definition encompasses two things: firstly, from a positive perspective, it encompasses a variety of ‘conditions’ and argues that disability may be socially constructed.  Secondly, on the flipside, it emphasizes medical or functional conditions and uses ‘normal’ as a term without explaining what this exactly means.  Considering that the UN speaks out for almost 200 nations we can assume that ‘normality’ is regarded differently in different parts of this planet, depending on environmental circumstances.  Therefore, I would like to emphasize that every definition has to be regarded in a social and cultural context.

Other definitions try to universalize, by referring to performing something like basic functions, rather than using the word ‘normal’. Though this might appear more attractive, agreeing on what is basic is similarly difficult.  In particular, given that some of us have access to technology which enhances or enables us to perform basic human tasks perhaps even better.  Probably more appropriate could be those definitions, which introduce the environment as a component of disability; though most of them still lack cross-cultural components and differences in societal standards.

Whichever definition is correct, all have to be interpreted in light of their purpose (e.g., the United Nations one mainly follows geopolitical objectives).  However, words like normal or basic are socially and culturally tainted and thus the context has to be taken into account.  An activity, in a certain country, might be considered inappropriate for a particular age, class, or sex which does not imply that those people are disabled, for example.

It might sound discouraging and inherently challenging to come to terms, while defining a word such as disability, and I certainly struggled in the beginning to accept that the discussion is necessary.  However, I came to understand that more than the term itself is the attitude one attaches to it that counts.  Thus, if we understand disability as being nothing abnormal, but as part of being human, language may not matter too much.

For the cause of this writing, I would like to argue in favor for a social model of disability, which will hopefully replace the medical definition in the future.  Once again it is not to be said that the latter model doesn’t have its benefits, but it does come with a negative stigma towards disabled people as being different.  In general, the multitude of definitions is partly a political discussion and academic endeavor to come to mutual agreeable terms.  The socially constructed view on disability is mainly related to the allocation of either a work-based or needs-based system of commodity distribution.

However, non-disabled people may misuse the challenge of defining disability to have a legitimate argument to upkeep a multi-billion-dollar business.  The struggle to define disability may never end if society fails to integrate people who it tries to address into the discussion, i.e. disabled people.  Though, even more so, there is an inherent threat in the disability right movement itself, in terms of disagreement about goals among various advocates; something which in my opinion reflects the identity discussion that is the subject of the entire discussion herewith and after.

Theory and Reality

“If we do not recognize, comprehend, or even believe that something is unjust, we won’t be able to articulate concerns or understand why those are raised (quote actually on me ;-))”.  Advocacy usually starts when issues arise based on misguided perceptions towards certain group(s) (e.g., the medical model of disability).  Perhaps as consequence, a social constructive view is established that begins with an individual, embodying an identity that is mutually accepted among activists, in an attempt to change society’s attitude, so that differences may vanish.

Moving towards such a model requires first and foremost integrating everyone. It could be argued in particular people with the point of view that caused the misguided beliefs. For instance, with regards to the ones that largely confined disability to bodily parts or functions and in order to have genuine impact on people with disabilities to make disability an accepted normality, the entire ‘disability business’ needs to be considered.  This includes people with disabilities, to give them a voice and to understand and accept their point of view, but also everyone else whose beliefs might be just based on misinformed assumptions.

From an academic point of view, people within the field of disability usually distance themselves from sociological contribution, given that those scholars haven’t paid much attention to the social dimension of disability; mainly focusing on the medical part of the equation.  However, disability has largely faced social oppression due to models like the functional or medical one, which in turn is addressed within sociology.  They should, therefore, be part of the discussion as well, in particular because debates about marginalized groups, regardless of race, ethnicity, sex, etc. have far too many similarities to be ignored.  Even further, some of those oppressed groups may as well have the same objectives as disability activists and may even share some values and beliefs.  The latter supporting the argument that identities can stretch much further then within a certain group.

Nonetheless theoretic discussions about issues such as terminology are one side of the medal, though it appears utopian to assume that a unified model (i.e. definition) will ever be established.  Overcoming the issue that various parties express different interests and have sometimes even conflicting objectives – including various forms of disability activists – makes it sound reasonable to look beyond the disability right movements to forge a stronger, well-aligned identity.

Language, in general, should be understood as something which is inherently ambiguous.  It is not to be said, that a medical or functional model of disability is fundamentally wrong, misguiding, or solely aimed at causing humiliation.  Narrowing our view to body parts with the intent of fixing something, can be useful in certain circumstances, but it can also be useful to integrate a more humane view, defining a person as being more than just the ‘assumed’ functional disability (i.e. a broader perspective).

However, the underlying issue is not the appropriateness of a narrower or broader definition but rather society’s attitude towards it.  The former pushes the problem onto the individual, which is usually understood as the cause that creates a negative stigma, such as the inability to be a productive member of society because of one’s disability.  The latter assumes that productivity can be established if society invests time not in curing the person, but rather improving the environment to allow that individual to fully utilize her/his potential.  Thus, I would like to argue that definitions, if they are adjusted to cultural and societal circumstances can be useful if we take them for what they are: conceptualization to attach a financial number, a legal claim, or an argument for needed support – usually creating and supporting a governmental need-based system in Western worlds – but those ‘theories’ won’t give real answers to real questions.

In sum, I argue that we need pluralism for theorizing disability.  Mainstream sociologists are not to be neglected, even though we might disregard their paternalistic view.  History shows that such a perspective can help to lift barriers and consequently reduce the impact disability might have on a person.  Accepting their theoretical framework as a helping hand in the dark, rather than stigmatizing people with disabilities, may therefore be one piece to come to agreeable terms.

The other side of the equation is to accept and understand a social constructivist view on disability considering the environment, cultural and societal circumstances, as determinants of disability.  In the end, we should come to terms that don’t disregard either of those points of view and perceive those more like an integrated approach towards an understanding of the nature of disability, towards a non- oppressive approach.