Joseph P. Dutkowsky, MD

NYCPDOC
Poverty and Disability

AMERICAN ACADEMY of CEREBRAL PALSY and DEVELOPMENTAL MEDICINE

(Cathleen Lyle Murray Lecture – 2011)

POVERTY AND DISABILITY

Rev. David E. Farrell, C.S.C.

Distinguished members of the Academy. Thank-you very much for your gracious invitation. I feel obliged from the out-set to make clear to you that the only reason which justifies my being invited to present the Cathleen Lyle Murray lecture, and the privilege of speaking with you for a few minutes, is the fact that I, through no merit of my own, am the president of Yancana Huasy, the name of the institution whose work we have just briefly seen in the video. Yancana Huasy in the Quechua language – the language of the Incas - means “House of Work”.

Located on the outskirts of Lima, Yancana Huasy, as seen in the video, is a community of women and men, children and parents, young and mature, who have come together to work, and hopefully to create the conditions and develop the capacities and capabilities for others to work. Parents and children, medical professionals and teachers, the private and public sectors, all work. They work to overcome the multiple limitations of the human condition with which you members of the academy are so familiar, certainly in medical terms, and which you yourselves work so effectively to alleviate, mitigate, manage and when possible to cure.

The inventory of disabilities - physical, cognitive, mental, sensory, developmental or emotional – (or the situations of those with special needs or different abilities) – is a long list of medical conditions and challenges, with which you are far more familiar than I. Inseparable from these medical conditions and situations to which you men and women bring your professional expertise, and, I am sure, your own human concern, there are also the complex human, existential, day-in, day out social situations of your patients. There are the sorrows and sacrifices of parents and/or the families of the patients. These personal and family factors are accompanied - and should be - by the necessary demands which the disabilities of some members of the community place on the whole community and the broader social context. These demands include the many difficult and complex situations in which the person with a disability and his or her family must live, hopefully to  receive medical attention, to be included in the life of the community and then hopefully to work, when this is at all possible.

These levels of existence and life of the individual with a disability and his/her family and the daily social interaction is a challenge, which, in the depths of my own mind, I have come to think of as a “life sentence”.

Along with the cases of the severe disabilities which you and Yancana Huasy confront and treat daily in the clinical and rehabilitation programs there is a “life sentence”, for the child or adult patient with a disability, for the parents and for the family and the loved ones who live with and must care for him or her. The necessary organizing and structuring of their own lives around the life of their family member with a disability - and this for all their time, in this world, is truly a “life sentence”. 

Each person in this human chain faces the personal pain, the anguish of the disability itself, the family pain and suffering. And then come the sufferings of being forced to confront the external difficulties and obstacles:  the community limitations, the social prejudices, the rejections and the obstacles, with which, at least in our context of Yancana Huasy, are unfortunately all too common.

The great challenge in this confrontation with the limitations of the human condition at the personal, family and community levels is to search, and with multiple efforts and time, hopefully to discover, how these negative and painful aspects of disability can somehow be converted into challenges to be accepted. Challenges which can be mitigated and treated, by the professional expertise, which you people possess and provide. Then there is the family who must manage the situation of their child or loved one, manage it with faithfulness and constancy and hope. These family and professional dimensions should be and can be surrounded by a community and a society which, at different levels and with a variety of means provide support to the person and the family. This community support is expressed through positive measures of openness and inclusion, and provisions of access to medical treatment, to education, to work opportunities (if this is possible) and obviously to public and private facilities which should accommodate all the members of the community.

These and many other measures taken in and by the community help to mitigate the personal and family pain of disabilities in the family and the community. They help to build hope. They make more noble our own lot in life, and, as we have all witnessed, can produce amazing results among the patients and those less fortunate than ourselves with whom we work.

Before Yancana Huasy had the professional response capabilities that it possesses today, particularly in the medical and rehabilitation fields, it was a community of men and women who were brought together and formed by an ideal and a purpose.
The ideal is that every person possesses an innate dignity and a worth – accompanied by rights (and obligations when possible) which must be recognized and respected by the family, by other persons, by the local community and by the broader society.

The purpose of the community at Yancana Huasy, derived from the ideal, was and is, to confront, to challenge and to change the perceptions and the treatment of those persons with disabilities – at times even by their own families, and certainly by the surrounding community and the broader society.

In our context, people with handicaps often times had been stigmatized, kept out of sight, literally “warehoused” or hidden away, in a back room or patio. And, in too many cases, they were kept in infrahuman conditions – by their own families.

Challenged by this unjust and inhuman reality of so many of those with disabilities, and driven by the ethical and solidarity motivations related to the innate human dignity of every person, the founders of Yancana Huasy - of which I personally was not a part - went about creating a new perception of and a new mentality, (at least for our context), concerning the person with a disability and his family, and both of them inserted into the surrounding community. This was particularly urgent – and at times difficult - given the situations of poverty and extreme poverty – with which many of you are familiar. (and also are searching for solutions.)

Above all, Yancana Huasy went about , and even more so today with increased medical and rehabilitation services, Yancana Huasy  goes about, creating a new hope for those with disabilities and also – and in many cases especially for their families who are an essential part of the treatment processes and the rehabilitation and educational programs. The medical and rehabilitation attention and programs are accompanied by information, educational, organizational, occupational, and advocacy dimensions directed to the surrounding community and the private and public sectors, concerning the personal, family and social and occupational situations of the person with a disability. The goal was and is that the patient and the family of a child or adult with a disability would no longer “feel alone” or be “left alone”, to face the multiple obstacles and trials which accompany every disability, even in the best of situations, and which increase dramatically among those living in poverty and extreme poverty, which is our case and that of many of you.

It is not my intention to dramatize the situation of those with disabilities. With your command of the science and art of your medical disciplines, which you daily bring to bear on each person you receive, I am sure that you also see beyond the procedures and protocols of the clinical examinations, the treatment and interventions, the study and research in your hospitals, your clinics and your offices.

Beyond the structures and controlled situations of a clinic or an office, which are essential for you to be effective as doctors and health professionals, are the human dramas of your patients which take place in their homes, neighborhoods, transportation facilities, schools and accesses to public facilities.

Those among you who come from countries with conditions similar to mine, and those many among you who go to, and contribute your work in our countries, and perhaps in the poverty situations in this country, you may have had the opportunity to observe up close and experience, in less controlled and less structured situations (than that of the clinic or hospital), the seemingly insurmountable obstacles which those with disabilities face in situations of poverty – poverty of every kind, and this added to their disabilities.

I say poverty “of every kind” because I have come to see that there are new cultures of (especially) urban poverties which characterize many of our cities in Latin America, and, I assume, the metropolitan areas in other continents. These poverties are the result of massive migration movements during the last six or seven decades, from the country-sides and rural areas to the cities and to the sprawling urban areas (and slums) which surround our cities, as is the case of Lima. Rapid and radical social, economic, cultural changes have taken place.

Our cities, our public authorities and our governing structures, with few exceptions, have been and still are unprepared, unable and incapable of providing the basic services and conditions necessary for a dignified human and family life among the poor. For many of the poor, it is a lack of water and sewage, adequate housing, access to basic health services, decent public education and above all, and the most important, decent employment opportunities – a decent job! In addition to these conditions, the poor are also exposed to the growing violence and crime, armed assaults and robbery and the pernicious effects of the international drug traffic, the trafficking of arms and even of human beings.

To compound this situation of the cultures of urban poverties, as both one of its principal causes and also consequences, there is the growing deficiency/crisis of structured and well constituted family life. It is the family that has historically proven to be essential for socialization and the inter-generational transmission of the personal and social habits and values necessary for the formation and growth of the person, and for the building of just, peaceful and democratic societies. Among significant numbers of those living in poverty, this is not happening today……

My friends, this in broad strokes are the situation and conditions of the family and neighborhood life of the poor, for those in the best of health, and - in a certain sense, because they are forced to do so, - those who are able to “fend for themselves”. “Fending for oneself” is very prevalent where I live. On the one hand, this is understandable.  For the most part, one must fend for oneself because no one else will look out for or defend anyone else. Fortunately there are the exceptions that we all have witnessed – exceptions which only tend to prove the rule. 

This pervasive individualism, of looking out just for oneself, - even if it is because no one else will - is an important element in the new urban cultures marked by the “survival of the fittest”. I speak of my experience in Latin America. My friends from other developing countries (with similar urbanization phenomena) may well be experiencing similar situations, as have during this past summer even some countries which have historically been considered as “developed” countries.

And our hosts here in North America can determine to what extent this kind of reality/thinking - actually it is an ideology - may have also penetrated American culture. This brief sketch may help to explain or at least provide a back-drop for the cultures of communal and social indifference and even violence as a part of and expressions of the new cultures of urban poverties in urban centers around the world and also here in the new inner cities of the United States.

However, we cannot ignore the fact that something very similar and perhaps less explicable is happening at the opposite end of the social and economic spectrum – at least here in the United States. To what extent is this same individualistic thinking and ideology not reflected also in the political discourses and decisions of the economic and political elites, the well to do, those whose personal health needs are well attended to, and whose personal, family and social situations are  well protected?  To what extent have they not formed, wittingly or not, together with lobbyists and media propagandists, a Greek chorus to accompany and support the tragic budget debates in the United States Congress during this past summer? The results of these “debates” and the unfortunate political decisions damage not only the overall economy of the country (and the world) but especially the situation of the poor and as a result, disproportionately, those with disabilities.

Out of the present situation, which is admittedly complex and challenging there emerges the inescapable question for those who work with children and adults with disabilities- of all kinds: “Who will lookout for those who are unable to lookout for themselves? Who will fend for those who cannot fend for themselves?”

Poverty and disability, in developing countries - and I ask how different is it for the poor and working poor in this country? - according to a World Bank research paper in 2009: “are intricately linked as both a cause and a consequence of each other. Unfortunately, due to lack of data and the difficulty of addressing the additional costs of disability, few estimates exist of the impact of disability on poverty ……… and that ignoring the issue of disability significantly understates both poverty and the impact of disability” (on individual and family poverty).

In our area (with a large population living in poverty) the percentage of disabled persons is higher, and, in some cases significantly higher, than in the general population of the country. Living in poverty increases the probability of acquiring a disability. And on the other hand the multiple costs related to disability - (the inability to work, the costs of treatments, the effects on personal and family morale) - tend to make the person with a disability and the family with a child or adult with a disability poorer. According to the United Nations this combination of poverty and disability has as a result, that a higher percentage of people with disabilities live in conditions of poverty than does the general population. And it is also the case that the elderly, those with intellectual or psychiatric impairments, (in addition to women in general, I might add), are more likely to live in situations of poverty.

Also according to the UN 87% of disabilities are acquired after birth in conditions of poverty: low birth weight, inadequate prenatal, birth and postnatal care, malnutrition, lack of vitamins, bad sanitary conditions, incomplete vaccinations, home, work and traffic accidents, drug and alcohol consumption, un-treated sicknesses. There are probably more…. 

While these topics are addressed in theory by International and Regional health organizations there are great discrepancies in my country as to the basic statistics of children and adults with disabilities. I daresay this is most likely the case in many other countries with populations living in poverty, including the United States, particularly if we include, as we must, the immigrant population here, living, as many do, in vulnerable and precarious health situations.

To encourage and actively promote disability statistics at the national, and the local level, would seem to be a task that health professionals could encourage, publicly support and I daresay achieve without great difficulty. The achievement of this challenge would be of immense benefit, especially in the developing and poor countries. I am sure that there are foundations which would support a well-designed research project on the multiple factors and dimensions of disability, disabled children and adults, and this with special reference to the situations of poverty.

Or at least a good research instrument and methodology for investigating and systematizing the data on the various facets of the reality of disabilities in situations of poverty could be designed and then applied locally in different countries and regions – initiating a process which could also be improved with experience. These kinds of projects would receive enthusiastic support particularly were such research to be promoted and sponsored by a professional group as prestigious as is your Academy.

My friends, your scientific and professional expertise make you respected members of your communities, at the local community level and some of you, and through your Academy all of you, are respected at the national and international levels. It is my conviction that your scientific and professional expertise, which is recognized by your neighbors and fellow citizens and by the broader society, can be converted into civic, social, private and public support for those with disabilities. This support, depending on local needs and conditions, can begin to address, especially among the poor, specific and concrete measures for access and inclusion of those with disabilities to health, education and occupational training and opportunities.

You, and I say this with respect as an outsider and as a layman among you, you have unsuspected and as yet untapped social weight and influence in your communities beyond your hospitals and clinics and rehabilitation centers. Your medical and scientific skills give you community recognition and moral authority - after all we do call you “doctor”- , which is more than a merely functional title. It also communicates recognition and respect for your skill - and for your vocation. This community recognition, respect and social influence can be a most positive force for shaping and reshaping the thinking in your local communities regarding people with disabilities and disabilities in general; for developing an awareness on the part of parents, teachers, students, public officials and even among your medical colleagues in general medicine and health professionals in other fields.

I am suggesting for a moment that we “think outside the box”, outside the hospital, or clinic or rehabilitation center, where you are obviously already doing good work. And as important participants in the broader community you are also able to benefit, not only your patients, but the whole community. The community, with your assistance will have taken on the situation and accepted the challenge of those members of the community –
children and adults with disabilities - who cannot fend for themselves.

Disabilities are a serious medical and rehabilitation challenge. You ladies and gentlemen respond to these challenges with professional competence every day. But disabilities are also a community, social, and, as a result, a political challenge - for the person with a disability, for the family and for the community. You are already accepting the challenge in ways that no one else can do: in your offices and hospitals, in your operating rooms and in the rehabilitation programs.

I am suggesting that you can also accept the challenge in social and political terms. Please do not be put off by my introducing “politics”. I say “political” in this context, not with the small  “p”  of party, (which may also be important in other contexts), but with the Capital P of the People and the especially the Poor People among us.

I suggest that the first step is this direction is an accurate picture, an X-ray, a Cat Scan, an MRI so to speak, of the individual, the family and the social reality of the disabilities, and the children and adults with disabilities, among us. An accurate quantitative and qualitative picture of disability in general and especially among those living in poverty, made available to your neighbors and to public authorities in you communities and regions and this as part of a national and international network would be an important step forward towards supporting families and in addressing disability in conditions of poverty which a family cannot do alone and without external support.

This first step in the research and information gathering at the local, national, and international levels will almost automatically begin to open the doors and the imaginations for successive steps in favor of those with disabilities. And the research itself will begin to make the community and the broader society increasingly sensitive to the needs of people with disabilities and the fact that many of their needs and those of their families are not being satisfied.

Among those topics that will begin to surface, which may be obvious to you members of the Academy, but still remain a challenge where I live, are the following: The education of the general population; especially of parents; of teachers; and even doctors in general medicine and health care professionals in other fields, in the: prevention, the early detection and the early intervention of disabilities. This need is particularly acute among the poor, at least in our experience where: the lack of knowledge, the lack of information, unconscious neglect, the lack of social abilities, the lack of resources to detect and address the disabilities, and the inescapable fact of just being absorbed and overcome with day to day survival, which is the life of the poor. All these factors end up producing the unfortunate and so many cases unnecessary sufferings which we, years later, attempt to correct medically….. at tremendous costs and with limited results.     

The American Academy is in a unique position to respond to these needs and challenges, here in the US and in countries like my own around the world. I will be suggesting to the excellent director of Yancana Huasy, Lic. José Antonio Patron who has brought our institution to new levels of performance  that we also be in permanent communication and cooperation with your Academy and share in the exciting challenges which are begging to be accepted – by all of us.

Thank you very much for your attention and for your generous invitation.
Rev. David E. Farrell, C.S.C. 
Yancana Huasy
San Juan de Lurigancho - Lima, Perú

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