Institute of Philosophy and Sociology,
Polish Academy of Sciences
Antonina Ostrowska, MD is a sociologist, and Head of the Research Group of Living Conditions and Social Foundations of Health at the PAS Institute of Philosophy and Sociology. Her main research interests lie in the sociological aspects of health, illness, and disability. From 1992 to 1995 she was the main author, research director and coordinator of a series of interdisciplinary studies on disability in Poland, which were published in fourteen topical volumes.
People’s attitudes towards the disabled have evolved over the centuries, shaped by a number of social processes, changing ideologies and values. During most of this time negative attitudes prevailed; people with disabilities were separated from the rest of society and subject to discrimination. As late as in the nineteenth century people with disfigured bodies were regarded as strange abominations. They were put on display at fairs, where they aroused fear, laughter, and mockery. Significant change came only in the twentieth century, with the advancement of science (especially medical rehabilitation), increased education among citizens, and the growing awareness of human rights. But even today we can often observe tangible remnants of these age-old beliefs and feelings in terms of the social exclusion these individuals experience. It is true that such attitudes are often hidden under a guise of ambivalence or indifference, as they runs against the generally professed social norms. However, when one reads posts on various online social networks written by people with disabilities, it is obvious that such attitudes towards them are not uncommon. This prompts us to ask: why as a society do we permanently exclude certain people from the mainstream? What is it about them that contributes to this rejection, and above all, which domains of life does it apply to?
Asking across two decades
There are all sorts of reasons that may underlie negative attitudes towards people with disabilities: fear and embarrassment in the face of their otherness, an inability to respond to their disabilities, a lack of knowledge and experience in dealing with them. And finally, a fear of their dependence on society. Such attitudes may also arise out of certain harmful stereotypes and oft-used colloquial turns of phrase, which ascribe to such individuals certain unfavorable personal characteristics or inadequately depict their difficulties and opportunities in life, and which are quite plainly harmful to such individuals.
It is crucial to recognize the existing stereotypes and attitudes towards people with disabilities, particularly when such slogans as “integrating persons with disabilities,” “removing barriers,” and “ensuring equal opportunities” have become significantly more popular in our country in recent years. How successful this integration is does not depend solely on institutional activities, or on the good will and motivation of people with disabilities, but rather results from all the interactions between them and the healthy part of society. Although in recent years a lot has been done in Poland to remove the architectural, institutional, and legal barriers faced by the disabled, it seems that much more remains to be done with regards to barriers of mentality and societal awareness, which still hinder the actual integration being achieved by our social policy.
In order to help identify the attitudes of our society and how they are changing over time, we carried out a survey twice, in 1993 and 2013 (with a nationwide representative samples of 1,241 people in the first instance, and 1,200 in the second, using the very same questionnaire in both cases). We sought to assess the degree to which healthy members of society are open to people with disabilities, and their willingness to accept them into a single, integrated society. The questions pertained to a number of different domains of life in which integration can take place: children’s education, work and employment, participation in public life, cultural and social life, but also more personal and intimate domains such as family and married life.
Someone should help (but not me)
Comparing the results of the two studies indicated an increase in the general acceptance of integrative measures. Polish society is becoming more aware of human rights, equal needs, and the principle of non-discrimination. The policy of creating inclusive schools, which disabled children attend alongside healthy ones, and inclusive workplaces, where persons with disabilities and able-bodied workers are employed on equal terms, is now generally accepted, certainly more so than 20 years ago. Appreciating the value of workplace integration for people with disabilities, the vast majority of our survey respondents are in favor of prioritizing employment opportunities for disabled workers. However, they know every little about any professional successes of such individuals – as most public attention is garnered by disabled Olympians. As such, the public consciousness is dominated by a picture of a person wronged by life and dependent on others. At the same time, awareness of the barriers faced by people with disabilities in everyday life is increasing. The need to engage the government, along with its social policy, in supporting disabled persons and the families that care for them is becoming increasingly recognized. We can also observe increased public support for all sorts of mass charity events, aimed at improving treatment, rehabilitation costs, and the living conditions of disabled individuals.
However, declared approval for the policy of helping people with disabilities does not always go hand in hand with a willingness to engage directly in providing such aid, or in developing personal contacts with the disabled. Despite the growing awareness and declared empathy for people with disabilities, as well as their growing presence and accessibility in public spaces, we saw no increase over the 20 year period we studied in the percentage of people in Poland who say they personally know and maintain friendly contacts or socialize with people with disabilities. This attests to the continued existence of barriers that pose an obstacle to such relations. As one reason for this, survey participants cited a certain uncertainty, an inability to respond to someone’s disability. Should you show compassion? How can you help without offending? The code of human relations dictates that you should not draw attention to someone’s disability, yet offering help requires you to do so. An additional element here is the reluctance and fear of confrontation with this otherness, such as someone’s disfigured body, or unusual behavior or movement. It can therefore be concluded that the problem here is the lack of proper socialization. At the same time, however, on the general public level, our results indicated growing social selfishness and apathy (6.5% in 1993 vs. 28.3% in 2013). This can be seen as symptomatic of certain broader trends occurring in Polish society: individualistic and consumption-centered trends, resulting in increased focus on one’s own issues and neglecting others. Disappointingly, the percentage of people who perceive the origins of disability as involving some kind of irrational factors (i.e. punishment for sin, evil deeds on the part of the affected person or their parents) has not changed, or may have actually slightly increased (14.2% in 1994 vs. 18.3% in 2013).
On the emotional level, especially in situations involving personal relationships, we still observe some resistance and difficulties in establishing contact with a person we perceive as different from those with whom we normally interact. We anticipate perceived limitations in such relationships, accompanied by our own fears, and specific stigmatization in the form of stereotypical messages. This is why the widely expressed approval of the policy of integration is not on par with simultaneous acceptance of actually “being together,” i.e. when the decision concerns a specific situation faced by the survey respondent. The level of this acceptance depends on various factors – such as older age, or past experience in contacts with disabled individuals, but also certain features of the disability itself.
Impairments not welcome
Potential acceptance or perceived distance towards people with various limitations depend on the types of these limitations, which functions they affect, how strongly they restrict the person, and how visible they are. Both studies tested the willingness to engage in four different types of contact in varying degree of closeness and intimacy. These included: social contact, friendship, shared education of a child in a school with disabled children, providing daily aid as a nurse or caregiver, and the marriage of a loved one. A three-step scale was used to evaluate the contact: I have nothing against it; I would agree to it though it wouldn’t be easy for me; I wouldn’t agree to it and would rather avoid it. Participants were then presented with images of disabled individuals representing six different types of limitations: motor (paraplegic), sensory (blindness, loss of vision), behavior (mental illness, harmless to others), aesthetic (visible distortion, deformation of the body, face), invisible functional (serious heart illness) and intellectual (mental retardation, intellectual disability).
These restrictions vary in terms of both the nature of the dysfunction which creates them, as well as their distinctness and visibility in society. The 1993 study indicated that a visible impairment, one which causes communication difficulties and limits functionality, causes the greatest social distance. These included mental illness and mental retardation. The smallest social gap was caused by invisible functional limitations, as well as motor function disabilities, illustrated by individuals confined to a wheelchair. Comparing the results of the two studies, we can conclude that over a period of two decades, the inclination to make contact with those disabilities which gave rise to the smallest social gap in the past remains at a similar level. At the same time, the social distance with respect to those previously most stigmatized, mentally ill and intellectually disabled persons, has narrowed. Reflecting on the causes of this change, it is worth noting the social transformation of the image of mentally ill and intellectually disabled persons. As recently as 20 years ago, mental illness was associated mainly with unpredictable behavior (“madness”), or presumed aggression, causing many concerns and fear of contact with the mentally ill. Recently, however, mental disorders are more often identified with depression, the incidence of which has also been on the rise. Sadness, depression, persistent insomnia, anxiety or melancholy may cause concern, but are not associated with a danger posed to society – hence their greater acceptance.
When it comes to mental retardation, we must take into account the exceptional activity of non-governmental associations representing the interests of such individuals. Numerous campaigns (walks, dignity parades) propagate the various skills and talents of these people, and their desire and ability to lead an independent (though often assisted) life. Here it is worth mentioning a disabled actor from the popular Polish television series “Klan”, whose life experiences have earned him not only the sympathy of audiences, but also contributed to a better understanding of the possibilities and limitations of disabled people. As the show ran over many years, the boy, initially portraying a nice, obedient and rather unreflective child, became an independent person, trying to shape his life based on his own values and preferences. For many, it was a lesson which showed that people with intellectual disabilities have the same desires and dreams, go through their own ups and downs and, in fact, are part of our common social landscape.
Of course the degree of willingness to connect with the disabled varies not only based on the type of disability, but also based on the degree of closeness and intimacy of the proposed contact. The readiness to form social connections (acquaintanceship, friendship) undoubtedly requires a relatively small degree of intimacy and is not associated with any specific duties or burdens, thus gaining the most number of supporters. But things are different when it comes to people’s willingness to engage in a close and intimate relationship, such as marriage. This requires both crossing certain barriers in intimate situations, as well as a solid commitment to help and care for the person, often exceeding the scope of such duties in relationships between able-bodied persons. Marriage, partnership, or intimacy with a disabled person (also often linked to personal hygiene care and treatments) requires the acceptance of a “different” body and often an atypical form of sexual intimacy. Physical proximity in everyday life, as well as sexual relations with a partner who’s “different,” are hard to reconcile with prevailing model and social expectations of a close relationship between two people. It is an awkward situation, which is difficult to imagine or accept. Aesthetics play a significant role here, penalizing the least those with an invisible, somatic disorder. Marriage to a person with a serious heart condition involves other forms of concerns about the nature of the relationship’s future, than a marriage to a person with a clear physical disability and bodily impairment. It is worth noting, however, that since the 1993 study the percentage of persons expressing a willingness to forge close, intimate relationships with people with disabilities from all six categories analyzed has increased. This may point to a gradual overcoming of the psychological resistance hampering such contacts. Advances in aesthetic medicine may also play a part here; formerly visible impairment can now be corrected, making it less visible and therefore reducing the stigmatism. But the question remains: to what extent can this closeness and intimacy be possible in all cases; perhaps in some cases of disability, it will remain problematic and difficult to accept by both sides.
The way we speak is paramount
When interpreting the recorded increase in acceptance of people with disabilities, we should consider the role of political correctness and its impact on the extent to which survey respondents declare their openness to mutual relations. Declared openness, after all, may to some extent be a reflection of a desire to conform with prevalent standards, which demand a proper, non-discriminatory attitude towards people with disabilities. The imperative to avoid situations that could jeopardize the dignity of disabled people, and disapproval of such attitudes and behavior, is becoming more present in the public consciousness. The discrepancies noted in the survey between expressed willingness to engage in relations with disabled persons, and the proportion of people who actually do engage in such relations, do indeed suggest the possible impact of such declarative correctness on the responses collected.
In analyzing this issue, we should consider the far-reaching consequences of such declarative, “correct” attitudes. Are they just a manifestation of views considered more acceptable, or do they actually lead in the long term to the internalization of norms valuing greater understanding, acceptance, and respect for diversity? The experiences of other countries seem to indicate that institutional transformations, the removal of barriers, adequate social education, and the use of correct language in public debate can indeed positively contribute to changing the public awareness of societies, and in the long term to breaking down prejudices, false beliefs, and apathy, thus leading to better integration. In this sense, the positive affirmations of the individuals surveyed, even if inspired by a certain “equality discourse,” can still be seen as a step towards further social inclusion of people with disabilities.
Further reading:Ostrowska A. (2015). Niepełnosprawni w społeczeństwie [The Disabled in Society]. Warsaw: IFiS PAN.
Gąciarz B., Rudnicki S. (eds). (2014). Polscy niepełnosprawni [Disabled Poles]. Kraków: AGH.
Wołowicz-Ruszkowska A. (2013). Zanikanie? Trajektorie tożsamości kobiet z niepełnosprawnością. [Disappearance? Trajectories of Identity in Women with Disabilities]. Warsaw: APS.
Kościelska M. (2004). Niechciana seksualność. [Unwanted Sexuality]. Warsaw: Jacek Santorski & Co.
© Academia 2 (50) 2016