International Centre for Bioethics, Culture and Disability

Wolbring , G. (2003) NBIC,NGO's society and three types of disabled people Paper written for the conference Within and Beyond the Limit of Human Nature October 12-16th 2003 Berlin, Germany Version from 21th. September 2003

I changed the formatting and added a piece see footnote 18 and 36 in regards to the usage of the term 'serious/severe disabilities,diseases'

NBIC, NGO’s and the three types of disabled people [1]

 

 

Abstract:

If we want to look at network and action possibilities, we have to ask ourselves a few questions

1)Do we want to network and action around a particular technology or even a subgroup within that technology e.g. genetic testing, genetic therapy, non-genetic testing. Or do we want to network and action around the purpose of a set of technologies e.g. the purpose of increasing competitiveness and capabilities of certain people in society and certain societies through converging technologies such as Biotechnology, Nanotechnology, Information-technology and Cognitive Sciences (NBIC).

2) Do we want to network and action around a safety critique of Science and Technology or around a social justice/societal critique or both?

3) We have to decide which effects of technologies we want to network and action for/against e.g. are we for/against/see it as irrelevant if a technology is species altering or are we for/against/see it as irrelevant if a technology is used to normalize members of any given society and normalize different societies towards one society.

4) Do we want to involve disabled people and other marginalized groups in a meaningful way in our networks and actions? If we answer this question with yes we have to decide in the case of disabled people which type of disabled people we want to include/involve under a given philosophy of a network. We have roughly three options. 1) The patient type who wishes to be fixed to the norm and sees their own biological reality as a defect, a group with whom the industry works, 2) the transhumanist type who sees their own body as well as the human body in general as a defect in need of not just fixing to the norm but augmentation above the norm with the addition of new abilities, a group with whom the transhumanist movement works and 3) the social justice social model type who rather wishes to use S&T to a) change the physical environment b) to change the interaction with the physical environment. This type focuses on social cures not medical cures and this type of disabled people so far has not many affiliations although they would fit the social justice movement.

Every developing network has to decide which subgroup of disabled people to involve. Not every disabled person fits every philosophy chosen for a network. It will be very difficult to involve "the disabled as a whole" which by the way is true for any group.

 

5)Do we want a global or local approach or both?

The debates are often different based on cultural backgrounds (see e.g. USA versus Germany). Do we work locally but with a framework of reference, we decide on globally?

These are just a few questions we have to answer if we want to develop networks and action plans

 

 

S&T, different models of disability and different types of disabled people

Science and technology (S & T) have had throughout history –and will have in the future- positive and negative consequences for human kind in general and disabled people in particular. S & T activity is the result of human activity imbued with intention and purpose and embodying the perspectives, purposes, prejudice and particular objectives of any given society in which the research takes place. S & T is developed within the cultural, economical, ethical, moral framework of the society in which the research takes place. Furthermore, the results of S & T are used in many different societies reflecting many different cultural, economical, ethical, moral frameworks. S&T can have an impact on disabled people by developing tools to adapt the environment disabled people live in and by giving disabled people tools which would allow them to deal with environmental challenges. This side of S&T would make the life of disabled people more livable without changing the identity and biological reality of the disabled person and S&T can have an impact on disabled people by developing tools which would eliminate the part of their biological reality seen as deficient, defect, impaired and ‘disabled’ (mM)

Recently a report was published by the National Science foundation (USA) in regards to the future use of Nanotechnology, Biotechnology, Info-technology and Cognitive sciences (NBIC).[2]  In general this report focuses on the ‘potential use’ of science and technology for increasing human abilities. Only a few contributions dealt with the societal implication of NBIC in general and in particular for disabled people (when I use the term disabled people it encompasses people who are define as having disabilities, diseases, defects and impairments). NBIC is often seen as the salvation for disabled people, as a marriage made in heaven, as the answer to all ills, as something disabled people should support unconditional. NBIC is sold with the promise to diminish/prevent the suffering of disabled people through; a) increasing their ‘abilities’ b) fixing their ‘disabilities’ or c) preventing disabled people through a variety of eugenic measures.

If technologies are the answers to all prayers for disabled people wouldn’t that suggest that organizations or movements who have the advancement of technologies especially the above mentioned NBIC at heart are natural allies for disabled people? Like the industry? Or subgroups of society such as transhumanists who advocate the moral right for those who so wish to use technology to extend their mental and physical (including reproductive) capacities and to improve their control over their own lives and who seek personal growth beyond their current biological limitations.[3] What are disabled people suppose to do? What options do they have? Should they promote every technology and every group, which is promoting technologies as a salvation for disabled people? What self-identity should they follow? Should they see themselves as the patient type of a disabled people with a technological/medical problem in need of fixing? Should they see themselves as persons (or persons to be) with an inherent problem that leads to a low quality of life for the person and his or her relatives?  Should they see medical care and rehabilitation (back to the norm treatment) as the primary venue for increasing their quality of life? Within the ‘medical model of disability’ management of the ‘disability’ is aimed at cure, prevention, or adaptation of the person (e.g. by provision of normative assistive devices).  At the societal/political level, the principal response is the support for the development of ANY new technology offering a medical/technological fix towards the norm.

Or should they see themselves as the transhumanist type of a disabled person, who sees their own body as well as the ‘normal’ human body as a defect in need of not just fixing to the norm but in need of augmentations above the norm with the addition of new abilities. The ‘transhumanist model of disability’ does not see the ‘disabled persons body’ as subnormal. It rather see the human body in general as deficient as something in need of improvement. Therefore it believes in improving any human body if possible whether it’s he one of disabled people or that of the so-called non-disabled. In this model in essence everyone is disabled (mM), everyone has defects in need of fixing. At the societal/political level, the principal response is the support for the development of ANY new technology offering the improvement of the human body and the norm.

Or is there another option? Could they see themselves as the social justice type of a disabled person following the social model of disability, which sees disability mainly as a socially created problem and principally as a matter of the full integration of individuals into society? Disability is not seen as an attribute of an individual, but rather a complex collection of conditions, many of which are created by the environment – particularly the social environment and socially mediated aspects of the physical environment. Hence, the management of the problem requires social action, and it is the collective responsibility of society at large to make the environmental modifications necessary for the full participation of people with disabilities in all areas of social life.  The issue is therefore an attitudinal or ideological one requiring social change, which at the political level becomes a question of human rights, to be seen in the same way as issues of gender and sexual orientation. In essence, able-ism[4] is comparable to racism, sexism, age-ism, homophobia, etc. The social model of disability does not negate that a disabled person has a certain biological reality (like having no legs), which makes her/him different in her/his abilities, which make her/him not fit the norm.  But it views the ‘need to fit a norm’ as the disability and questions whether many deviations from the norm need a medical solution (adherence to the norm) or a social solution (change/elimination of norm)[5]. Indeed many so called diseases defects impairments are not associated with acute medical failures but are more or less a societal construction[6]. It also does not negate the existence of symptomatic acute medical problems which should be treated but in the same way as a ‘non disabled’ who is ill with a flu and who is treated for this acute illness with medicine is not defined as a disease a ‘disabled’ can have acute medical periods without being solely seen as a disease. Many so-called disabilities can be seen within a medical/transhumanist or societal framework (i.e. Down Syndrome, phocomelia, spina bifida…).

 

What model of disability and self-identity disabled people follow has implications for their relationship to S&T.

Let’s take a look at a -so called- ‘disabled person’ without legs.  If he/she sees him/herself as a defect in need of legs he/she sees him/herself as a -so called - medical problem in need of fixing. Furthermore if he/she sees the concept of legs as they are as outdated and deficient and therefore tries to add on mobility devices to their body which makes him/her much more capable in his/her mobility than mere biological legs could provide with that self-understanding this person will of course support everyone and everything offering him/her this augmentation. However what if that person sees themselves as just fine in his/her biological reality and their different mode of movement? What if that person wants to have a societal cure meaning the fixing of society meaning that society starts to support their way of movement (wheelchair, crawling….)? This person would question the technologies and their supporters more critical as to whether certain technologies indeed help someone within their framework of self worth and self-identity or whether the technology becomes a tool of oppression trying to fit the person within the framework of societal expectations.    

Question is which model of disability and which self-identity will carry the day in the end.

 

Disabled groups relation to S&T

 

Which model of disability and which self-identity will carry the day in the end will depend on many factors i.e. the relationship of disabled people with groups who promote and oppose the technologies.  

Many bio/gene/nanotechnology applications e.g. predictive testing, cures, adaptation and their supporters focus on the individual and his or her perceived shortcomings. They follow a medical, not a transhumanist/social evaluation of a characteristic (biological reality) and therefore offer only medical solutions (prevention or cure/normative adaptation) and no transhumanist solutions (augmentation, enhancement of every human body) and no social solutions (acceptance, societal cures of equal rights and respect). Furthermore the use and development focus of bio/gene/nanotechnology as it is perpetuates the medical, intrinsic, individualistic, defect view of disability. 

So lets examine some of the players in the debate. We don’t have to talk about the industry and the medical profession and sadly the majority of bioethicists. They for different reasons adhere to the medical model of disability.[7]  But lets have a look at some other players like the Ascender Alliance the first disabled transhumanist group recently founded in the UK [8]and some of the NGO’s critical of NBIC.

The Manifesto of the Ascender Alliance states,

“Technology exists now, and in the future, to enable us to achieve one hundred percent of our potential and even beyond”.[9]  It goes on saying, ”We have as much right to see the future; we have equal rights to plan our future. Our lives are as valuable as everyone else’s. We may have limitations; some of us have over come them, and others have not. But that does not mean that we should be terminated, bred out and institutionalised. At the same time it is our right to remain as we are, we should not have to change to suit anyone but ourselves. We understand why some DMP(disabled member of the public)  are satisfied the way they are and respect their wishes; we support no program of forced normalcy but expect other DMP to understand and respect our wishes. Ascenders do not advocate any program that ‘cuts out’ any proportion of humanity, as would be the case with eugenics and other selective breeding programs. An Ascender needs only the will to improve them selves”. It says further,” An Ascender realizes the potential power of genetic engineering; but we feel that a small genetic elite should not control society or dictate the future course of the species. We seek to improve life for all of humanity. Ascenders do not subscribe to the belief that what we believe to be the best course for society will be approved by future generations, hence the desire to limit the amount of irreversible genetic intervention. Moreover, no being should be forced to have superior physical and mental attributes; the right to self-determination begins even before conception. There is only one condition under which pre-natal manipulation is expectable; when it is necessary to repair life-threatening mental and physical deficiencies.[10]

 

We do not want a world were disabled people ‘suffer’ but it is time for the world at large to realize that a disability does not mean we have a lesser quality of life; disabled people have the same right to life as everyone else and the same rights to use new and emerging technologies to negate their disabilities if they see fit to do so. If we are to end disability, both in terms of the medical effect it has on those who have said disabilities and the way in which society hampers disabled people, it has to be on our terms and not by shedding the blood of innocent men and women.[11]

 

 

 

The above quotes contain a few key demands by the ascender alliance in regards to the use and development of NBIC

a) The right for self-determination, which is interpreted in my view rightly to be extended to the pre birth stage and the future generation. This view of the concept of self-determination has quite a few consequences, as I will show later on.

b) The prohibition of negative eugenics through e.g. prenatal deselection

c) The prohibition of germ line genetic intervention

d) The prohibition of somatic genetic and non-genetic intervention of children and fetuses

e) As it is may be impossible to ensure that somatic manipulations will be confined to somatic cells and won’t effect germ line reproductive cells point a) and c) might also mean the prohibition of somatic genetic intervention of adults

f) The prohibition of non-genetic interventions of children and fetuses

g) The acceptance of the right of adults to modify themselves through somatic genetic (may be) and non genetic interventions

 

The general message of the Ascender Alliance Manifest is twofold: a) No one has the right to judge biological realities/characteristics of others independent of the stage of human development available for judging and prevent or change them based on that judgment and b) everyone has the right to change themselves as long as these changed abilities are available for everyone and are not transmitted to the next generation.

 

The Ascender Alliance is obviously a group belonging to the transhumanist type of disabled people. Let’s give you the views of some disability groups who believe in the social and similar models of disability and who see themselves as a social justice type of disabled people. The resolutions of the bioethics workshops at the 6th World Assembly of Disabled People International (DPI) 2002 states e.g.

Resolutions: Theme: Bioethics Topic: Genetics & Discrimination

I we demand the right to be different

II We believe that no parent has the right to design and select their unborn child to be according to their own desires and no parent has the right to design their born child according to their own desires.

III We defends and demand a concept of "person" that is not linked to a certain set of abilities 

 

 

Delegates from Disabled People International (DPI) organizations in twenty-seven countries in Europe, African, Australia, and North America, met in Solihull, UK to discuss bioethics and human rights. The Solihull declaration says among other things:

“We demand an end to the bio-medical elimination of diversity, to gene selection based on market forces and to the setting of norms and standards by non-disabled people.”

“Biotechnological change must not be an excuse for control or manipulation of the human condition or bio-diversity.”

“An absolute prohibition on compulsory genetic testing and the pressurizing of women to eliminate - at any stage in the reproductive process - unborn children who, it is considered, may become disabled.”

“That European governments do not ratify the Convention on Human Rights and Biomedicine as some sections are in contravention of the two documents adopted at the 1999 UNESCO Conference on Sciences.”

”That disabled people have assistance to live - not assistance to die.”

”That having a disabled child is not a special legal consideration for abortion.”

”That no demarcation lines are drawn regarding severity or types of impairment. This creates hierarchies and leads to increased discrimination of disabled people generally.”[12]

 

 

Non-disabled groups views in favor of S&T

 

How does the message of the ascender alliance and other disability groups relate to the messages put out in the debate by the ‘non-disabled’?

 

Let’s first have a look at non-disabled transhumanist. They want to have the right to improve themselves through genetic and non-genetic means[13]. But is there more to it? If we follow the debate we see that this right to improve oneself is extended to include the manipulation of ones kid and kid to be not just the manipulation of oneself. [14] This extension of the right to manipulate oneself to the right of manipulating the kid or kid to be is justified among others with the argument of parental responsibility. Is this a valid argument? Lets look at the example of Cochlear implants. Do we allow parents to refuse them if they feel there is nothing wrong with their child using sign language, lip reading, or other alternative modes of communication?  Will the refusal by such parents be viewed as child abuse?  Might parents have been considered to have committed child abuse if they refused artificial limbs for their Thalidomide children?  Could a mother be considered to commit child abuse if she refuses to terminate her pregnancy after ultrasound showed phocomelia (i.e., hands and feet attached close to the body without arms or legs) in the fetus?  In general, would the mother/parents abuse society and/or the child by not fixing the “problem”?

The answer seems to be yes. There are quite a few bioethicists who see the refusal of cochlear implants as child abuse.[15] Furthermore a mother was just recently charged in the USA because she refuses to give cochlear implants to her kids.[16] Although she won, the argument was based on paternal rights to decide for their kid, which obviously is against the views of the ascender alliance or the bioethics resolutions of the bioethics workshops of the 6th World Assembly of disabled people. Furthermore if it is a parent’s right it can very easy be construed as a parent’s responsibility. I fear we will see more of these kinds of lawsuits.  And the results of the following survey of genetic counselors in different countries also seem to indicate that the mother/parents abuse society and/or the child by not fixing the “problem”. 

 

When read the statement that, “it is unfair to a child to be born with a disability,” the majority in 24 countries agreed, along with 40% in USA, Canada and Chile; 36% in Finland and UK; 33% in Switzerland and the Netherlands; 29% in Argentina, 27% in Australia 25% in Sweden and 18% in Japan.[17] There was also widespread agreement with the statement, “It is socially irresponsible knowingly to bring an infant with a serious[18] genetic disorder into the world in an era of prenatal diagnosis.” Although there is no legal definition of “serious,” more than 50% agreed in South Africa, Belgium, Greece, Portugal, Czech Republic, Hungary, Poland, Russia, Israel, Turkey, China, India, Thailand, Brazil, Columbia, Cuba, Mexico, Peru, and Venezuela; as did 26% of US geneticists, 55% of US primary care physicians, and 44% of US patients.[19]

 

There are obviously quite severe differences between the position of the non-disabled Transhumanists and the position of the ascender alliance and the transhumanist type of disabled people in general in their understanding of the limits of the use of these new technologies. The views of the ‘non-disabled transhumanist also collides with the views of many social justice type of disabled people.  As for other promoters of S&T the pharmaceutical industry and the rehabilitation industry are in the moment supporting S&T as it relates to the norm and fit therefore the medical type of disabled people totally the transhumanist type partly and the social justice type not at all.

 

‘Non-disabled’ groups critical of S&T

 

The sad truth is that many ‘non-disabled’ NGO ‘s who work on a S&T critique do not know about a disability right angle on biotech. Many ‘non-disabled’ NGO’s working in the field, see disability as a medical problem and see the link to disabled people through the term ‘health issues of NBIC’. Very few see disability as a social justice issue and see disability together with the term ‘social justice issues of NBIC.  This is understandable as they are a product of their lifelong exposure to a medical view of disability. Very few non-disabled’ NGO’s who are aware of a disability rights angle on the issues try to give disabled people a platform and agree with their analyses (for example the Edmonds Institute and ETC). Furthermore there are ‘non-disabled’ NGO’s who are aware of a disability rights angle on the issues but choose to ignore (due to Realpolitik) or even reject a disability rights angle on NBIC which leads to the consequence that they use often in their work arguments detrimental to the transhumanist model/identity of disabled people and the social model/identity of disabled people and their fight for social justice. One example of the detrimental strategy of ‘non-disabled’ NGO’s working on a S&T critique is the following:

“Many advocates of germline engineering say it is needed to allow couples to avoid passing on genetic diseases such as cystic fibrosis or sickle cell anemia. This is simply not true. Far less consequential methods (such as pre-natal and pre-implantation screening) already exist to accomplish this same goal. Germline manipulation is necessary only if you wish to "enhance" your children with genes they wouldn't be able to get from you or your partner”. [20]

What are the implications of this quote? The quote derives from the attempt to counteract arguments used to justify germ line genetic intervention HOWEVER it justifies this demand for prohibition not with a human rights argument of self-determination as the ascender manifesto tries to do but with a medical argument of medical necessity. It in essence sells the prohibition of germ line genetic intervention by promoting alternative methods to achieve the same goal. The quote can be seen as promoting eugenic measures, because these technologies are mentioned as an alternative to eugenics achieved through germ line genetic intervention without mentioning anywhere else in the same policy papers that they would like to ban the eugenic application of genetic diagnostic tools. This makes sense because if the writers would oppose the eugenic use of genetic diagnostic tools they could not list them in their quote as a ‘less consequential’ safer alternative to germline genetic interventions. Beside that I think that it does not work to play one technology against another if both are based on the same desires[21] the writers in essence promotes (may be without realizing it?) with this argument the normalization of society and the discarding of characteristics not seen as fitting the norm. They enhance further a society-based form of normalized able-ism .

Another example of the detrimental strategy of ‘non-disabled’ NGO’s working on a S&T critique is their distinction between sex selection and ‘disability’ deselection.

A sign on letter looking for the prohibition of sex selection using preimplantation genetic diagnostics states:

 

 “Our organizations, which work to promote the rights, health, and reproductive freedoms of women, believe that condoning the non-medical use of PGD for sex selection would promote an already controversial technology for an inherently discriminatory use. While motivations for desiring a child of a particular sex may vary, there are no non-sexist reasons for pre-selecting sex except in cases of preventing serious sex-linked diseases. This is true even in the United States, where economic and social pressures to raise male children are minimized in comparison to other societies”[22].

 

This statement demands the prohibition of the non-medical use of Preimplantation genetic diagnostic for sex selection. The argument used is that sex selection would be an inherently discriminatory use of preimplantation diagnostics. Indeed it would be but it would be in the same way an inherently discriminatory use of preimplantation diagnostics if we use it to select for certain abilities or deselect based on a lack of abilities. However it seems that discrimination is not equal discrimination. An ‘animal farm’ philosophy and atmosphere and a double morality seems to exist in the argument of many of the ‘non-disabled’ NGO’s and others who defend the prohibition of sex selection but do not defend and demand at the same time the prohibition of ‘disability deselection (mM)’. It seems as long as something is labeled as ‘medical use’ and as something, which targets diseases, disabilities, and defects the inherently discriminatory use of a technology is allowed. It is interesting that a draft report on preimplantation genetic diagnostic and germ line genetic intervention by the international bioethics committee of the UNSCO seems to be in favor of enhancements as long as they are done for “medical reasons’ when it says:

“Without further elaboration our Committee rejects the idea of testing and/or enhancing any human characteristic other than those of importance in alleviating suffering by disease.”[23]

Furthermore the statement implicates very clearly that reasons based on sex-ism are unacceptable but reasons based on normalized able-ism are acceptable.   In regards to the discriminatory distinction between sex selection and disability deselection very few side with disabled people on the issue. If you look at the list of signatories[24] it is a sad event to see how many non-disabled people and groups which look at gene technology in a critical way in essence promote an able-ist, discriminatory, anti disabled, anti human right society and reasoning. The same groups who shy away to ask for the prohibition of eugenic measures based on disability (see above) have no problem now to demand the prohibition based on the sex of the child to be. By demanding sex selection prohibition without ability selection prohibition (achieved through government legislation) they actually promote not just personal eugenic practices but also societal, government sanctioned eugenic practices. And indeed many countries and international documents developed disability discriminatory prebirth strategies by allowing deselections based on the genetic characteristics labeled as ‘disabilities’ and by prohibiting deselections based on the genetic characteristics labeled as ‘sex’. Genetic discrimination is even clearer in the  distinction between prohibiting sex selection for ‘social reasons’ (gender balancing and wish of parents) and allowing sex selection for ‘medical reasons’ (preventing so called X-linked diseases). (See for example laws and legal practices of The State of Pennsylvania, USA[25], India[26], China[27], Germany[28], Turkey[29], Great Britain[30], and Norway[31]). Some countries, such as Canada[32], intend to adopt acts that would outlaw sex selection for ‘social reasons’. Furthermore at least three international documents demand the prohibition of sex selection for ‘non-medical reasons’.

First, the European Convention on Human Rights and Biomedicine, which states in Article 14 on the Non-Selection of Sex:

“The use of techniques of medically assisted procreation shall not be allowed for the purpose of choosing a future child's sex, except where serious hereditary sex-related disease is to be avoided.”[33]

 

Second, the WHO Draft Guidelines for Bioethics, which asserts in Article 21 that

“Sex is not a disease. Except for severe sex-linked genetic disorders, the use of genetic services for the purpose of sex-selection is not acceptable.”[34]

 

Third, the Report of the International Bioethics Committee of the UNESCO on Pre-Implantation Genetic Diagnosis and Germ-Line Intervention, which states in Section 68 that

“Destruction of embryos for non medical reasons or termination of pregnancies because of a specific gender are not ‘counterbalanced’ by avoiding later suffering by a severe disease. Sex selection by PGD or PD is therefore considered as unethical.”[35]

Often the term serious or severe is used implying that there is a qualitative/ethical difference between targeting so called severe/serious and non severe/serious disease, disability, and defect. However this is a smokescreen.  In the end there is no way to distinguish between different so called disabilities, diseases, defects disorders and impairments. [36] Reality tells us that ethics and other policies do not draw a line between severe/serious and non severe/serious but between the usage concept of 'medical reasons' versus 'social reasons'.

Bioethicist and genetic professionals often share the opinion that “sex selection lowers the status of women in general and perpetuates the situation that gave rise to it” [37] and many are against sex selection for the above and a variety of other reasons. [38] However, they do not accept the same argument if used by disabled people demanding a stop to the deselections based on abilities. [39] All of these laws and the international documents in the end justify the distinction between disability deselections and sex selection by labeling disability as a medical problem as outlined above. However, if they would accept the social model of disability, which sees able-ism [40] on par with sex-ism, this selective prohibition based on selective characteristics would not be justifiable and Articles 11 and 14 of the European Convention on Human Rights and Biomedicine would directly collide with each other. Furthermore, as prohibition of sex selection can only work on the non-person pre-birth state of a human being, as that’s the place where sex selection takes place, we have the case that Article 14 demands the prohibition of genetic discrimination (sex is a genetic condition) against a non person. And if genetic discrimination against a non person is to be outlawed than it should follow that that has to include the outlawing of genetic discrimination against any non-person independent on which characteristic is targeted in the non-person.  In this sense, Articles 11 and 14 of the European Convention collide.

 

 

The Consequence

 

Now in theory disabled people could choose between three ways. They can opt for getting fixed to a societal norm (the patient type).  They can opt not only be fixed to a norm but also to be enhanced, augmented above the norm (the Transhumanist type) and they can opt to have the physical environment, the interaction with the physical environment, and the societal climate changed to accommodate their biological reality (the social justice social model type)

Taken into account public perception, which sees disabled people as patients and indoctrinates disabled people with that view and taken into account that the industry and others have a vested interest in the patient type of disabled people it is not surprising that many disabled people follow that option. Not only that this group will increase the more they are left out of the social justice movement the less chance they see for a social cure[41]. and the more they can see medical fixes becoming realities.

Furthermore, we see an increase in the transhumanist type of disabled people who do not necessarily see themselves as patients in need of a medical fix but do see the human body in general as a defect product in need of changes. They do not believe in a species typical set of abilities and they don’t believe in a norm and want to change their confinement to their genes and bodily structures[42]. They want total morphological and genetic freedom to live out their dreams and self-identity.  This type of disabled people will also grow with an increase in technological abilities, the raise of a non-disabled transhumanist movement and the increase realization that society will not provide them with a social cure for their biological realities[43]. 

What solutions do theses two groups see in their future? Technological fixes changing the persons biological reality which can be envisioned in the nearer future are a) bionic replacements of a variety of biological parts such as bionic eyes, ears, legs, arms, hearts, insulin pumps, skins, b) brain-machine interphases, which allow for mind control of the physical environment, c) changes in the traditional way of sexual intercourse and pleasure, d) nanomaterials, which will strengthen muscles and bones, e) integration of communication tool into the body itself. Many of these changes could be performed on the individual and could be called somatic non-genetic therapy. Some of them could be performed in utero. Beside that, the above groups also hope for genetic tools to fix/manipulate their own genes. Technological prevention tools leading to the total eugenic predeselection on the embryo and fetus level if no in-utero or after-birth fixes are available (e.g. genetic/non genetic fixes and enhancements) is also a future possibility. All of these solutions for the patient and the transhumanist type of disabled people will of course have consequences for the so-called non-disabled. Many of the interventions on the person (not the eugenic deselection part) will/can lead to people, who have outgrown the norm making them more able than the norm giving them a competitive edge in society making them top in their competitiveness class. The non-disabled transhumanist for sure want to follow the disabled transhumanist adding all kind of augmentations to their bodies helping themselves to fulfill their own desires and making themselves more competitive. Next we know rich parents might think it a good idea to give improved abilities to their kids and so forth and voila we have a normative creep where the norm is shifted to higher abilities meaning the  ‘disabled’ (mM) of today will set the new norm (normative creep) after they were ‘fixed’ above the old norm (becoming the new ‘non-disabled’ (sM)) and the ‘non-disabled’ (sM) of today will be seen as the new ‘disabled’ (mM).

Now we still have the third type of disabled people who are the social justice type who might not want to change themselves but purely the environment and the interaction with the environment. They might not opt for bionic legs but for ramps and wheelchairs, which are practical, useful, contain top-notch material, and are affordable. They might go for external technologies e.g. GPS devices in the cane tip of a blind person and teleportation devices to move themselves from one spot to another. The consequences for the non-disabled are also clear. Many of these technologies, which make it easier for disabled people (SM) to maneuver the physical environment, make it also easier for the non-disabled people (see elevator) to maneuver the physical environment. However, this third group can easily join the transhumanist type if they indeed see that their social justice arguments are not accepted and incorporated by other social justice groups and they develop the feeling that the social justice argument is a dead end and they feel that they are simply not part of the social justice movement[44] and they are ridiculed for their views[45].  Furthermore the societal structure and sentiment might not allow them to see themselves as a social justice type. [46]. Reality is that funding opportunities for organizations trying to push for the social justice type of disability hardly exist whereas the patient type already and soon the transhumanist type will have access to much more funding. It is interesting how many progressive funding agencies who fund social justice issues say that a disability rights approach to NBIC does not fit their guidelines (whereas of course they have money to look at racism and NBIC, the environment and NBIC, third world and NBIC…).  As the patient type of disability has no problem to get funds from industry…for a medical view of NBIC this funding reality is another reason why the social justice type of disabled people is an endangered species.

 

Globally the above dynamics are of course also a problem in particular to disabled people in poor countries. The negative image the patient image of disability promoted in the rich countries as outlined above of course also has an impact on the perception of disabled people in poor countries. Every time the media salivate over another toe movement of Christopher Reeves this has an impact on the perception of disabled people in poor countries making it more difficult to be accepted for who they are. They are moved more and more into the fixing medical model. However different to the rich countries in the poor countries of course the system will never be able to actually pay for the medical/transhumanist fixes leaving the disabled with a medical image without a chance for a medical or social cure[47]   

Now if we look at ‘non-disabled’ NGO’s working on a NBIC or biotech critique who make a distinction between sex selection and disability deselection and who try to sell the prohibition of germ line interventions by pointing out that safer technologies (e.g. preimplantation genetic diagnostics and prenatal diagnostics) exist to achieve the same goal namely the eradication of diseases, disabilities, impairments, defects and disorders their arguments make it hard for any of the three types of disabled people to join them.

The patient type would be the most likely because these non-disabled NGO’s might fit them because it makes allowance of genetic prebirth eugenics and somatic genetic and non-genetic therapies.  They might not fit them because patient type of disabled people might want germline gene therapy something these non-disabled NGO’s do not want.

The transhumanist type of disabled people will very likely not be attracted to these non-disabled NGO’s as they have little problems with species altering technologies (as long as it is done by adults to themselves), whether on the somatic level through genetic and non genetic means or through external add on interventions which might give this individual non normative species alien abilities and solutions to their problem of fighting for support and respect by others whereby the non-disabled NGO’s who use the above mentioned strategy very likely opposes species altering intervention on the somatic and germline level.

The social justice disabled person also seems not to be a good fit for the non-disabled NGO’s who use the above mentioned strategies as they would denounce any elimination eugenic measure something these non-disabled NGO’s still promotes simply by the virtue of their arguments.

Reality is that the patient and transhumanist type of disabled people will/has found a home with a variety of groups (industry, transhumanists), who promote the technologies whereas the social justice type of disabled person still looks for groups it might fit with. Furthermore the last group is very likely also the smallest group as they behave the most out of how they where trained to behave by society. This group will diminish more and the patient and transhumanist type will increase the longer disabled people have to wait for social cures[48] and respectful treatment

 

Where does it leave us with the NBIC ? The ability selection or disability deselection sentiment will further gain public acceptance especially in the absence of the acceptance of a societal social justice view of disability by human rights and techno critical groups and individual people and the acceptance of a medical/patient view of disabled people by bioethicists/industry/medical professions and the public at large. In essence any technology will get the go ahead as long as it promises that it can wipe out disabilities and improve abilities[49].  They just have to make sure it is seen as safe and confinable. And it will become the moral responsible way of acting.

Where does the reality of this debate leave disabled people? Stuck with the medical/transhumanist model of disability. Where does it leave society? In an ability rat race. Ability to perform better. Ability to make more money. Ability to win commercial competitions….



[1] There are three types of disabled people 1) the patient type who wishes to be fixed to the norm and sees their own biological reality as a defect 2) the transhumanist type who sees a) their own body as well as the human body in general as a defect in need of not just fixing to the norm but augmentation above the norm with the addition of new abilities and 3) the social justice social model type who rather wishes to use S&T to a) change the physical environment b) to change the interaction with the physical environment. This type  focuses on social cures not medical cures   

[2] <http://www.wtec.org/ConvergingTechnologies>.

[3] <http://www.transhumanism.org/declaration.htm>

[4] Ableism: a network of beliefs, processes and practices that produce a particular kind of self and body (the corporeal standard) that is projected as the perfect, species-typical and therefore essential and fully human. Disability then, is a diminished state of being human

Fiona A.K. Campbell (2001) Inciting Legal Fictions: Disability Date with Ontology and the Ableist Body of the Law, Griffith Law Review, Vol 2., <http://www.gu.edu.au/centre/glr/content2r.html#four>

[5] Beside the above described two models other models exist such as Bio-Medical, Economic, Liberal, Social-Political, the Minority Rights and the Universalist model[5]

Penney describes the Universalist model as follows[5]:

The model I present, in keeping with the Universalist position, holds that there are no intrinsic boundaries to who or what is disabled. This is a political question to be answered through a contextual analysis. Also consistent with the Universalist approach, the model eliminates categories and references to norms to anchor its conceptual framework. Instead, it lays out a guidelines for a fully unified and contextual approach to disability for the purposes of section 15(1): Disability is a limitation on participation resulting from an interaction between: (a) bio-physiological conditions including differences in psychological, physiological, and anatomical structure, range, and function; and (b) environmental and external conditions including historical, social, economic, political, and behavioural factors. It is important to clarify the meaning of “limitation on participation” in the new approach. Unlike “functional limitation”, this new term represents limitations on an individual’s full participation in a range of life activities as a result of his or her disabilities. Thus, any range of limitations on participation across a range of activities resulting from bio-physiological characteristics and environmental factors may constitute a disability for the purposes of section 15(1).

Jonathan Penney 2002 v1n1 Journal of Law and Equality of A Constitution for the Disabled or a Disabled Constitution? Toward a New Approach to Disability for the Purposes of Section 15(1) p83-94 http://www.jle.ca/files/v1n1/JLEv1n1art3.htm

[6] Wolbring 2003 The social construct of health and medicine in Health Ethics Today Vol 13 Number 1 page 5-6

[7] Harris, J. 2000. J. of Medical Ethics 26: 95-100; At the 10th “Genetic Technology & Public Policy in the New Millennium” symposium, Daniel W. Brock, a bioethicist at the National Institutes of Health, gave a presentation entitled “Genetic Testing and Selection: A Response to the Disability Movement’s Critique.” In which he said: “Our notion of how good a person’s life is [isn’t] fully determined by their own subjective self-assessment,” Brock told his audience. Quoted in Targeting the disabled by Roberto Rivera y Carlo 2002 Boundless Magazine http://www.boundless.org/2002_2003/features/a0000685.html  

[8] <http://www.geocities.com/primeascender>

[9] http://groups.yahoo.com/group/Ascender_Alliance/files/ASCALLI-14JAN02-DISABLED%20CYBORGS.doc

[10] http://groups.yahoo.com/group/Ascender_Alliance/files/ASCALLI-07JAN02-MANIFESTO-V2.doc

[11] http://groups.yahoo.com/group/Ascender_Alliance/files/ASCALLI-06SEP02-ANTIEUGENICS-RACISM%20POLICY.doc

[12] http://www.johnnypops.demon.co.uk/bioethicsdeclaration/index.htm

[13] TheTranshumanist Declaration http://www.transhumanism.org/declaration.htm

[14] . E.g. http://www.changesurfer.com/eventhorizon/index.html#say  http://www.bioethicsanddisability.org/transhumanism.html see section transhumanism and disability.

[15] Harris, J. 2000. J. of Medical Ethics 26: 95-100).  

[16] http://groups.yahoo.com/group/grdeaf_protest/ http://www.raggededgemagazine.com/drn/10_02.shtml#446 . 

[17] Wertz, DC, 1998"Eugenics is Alive and Well," Science in Context, Vol. 11, No 3-4, p. 493-510 

[18] Often the term serious or severe is used implying that there is a qualitative/ethical difference between targeting so called severe/serious and non severe/serious disease, disability, and defect. However this is a smokescreen.  In the end there is no way to distinguish between different so called disabilities, diseases, defects disorders and impairments. Reality tells us that ethics and other policies do not draw a line between severe/serious and non severe/serious but between the usage concept of 'medical reasons' versus 'social reasons' see for example Group of Advisers on the Ethical Implications of Biotechnology (GAEIB) (1996) The Ethical Aspects of Prenatal Diagnosis. Opinion of the Group of Advisers on the Ethical Implications of Biotechnology to the European Commission, No.6, February 20, 1996 (Brussels: The European Commission), available at http://europa.eu.int/comm/european_group_ethics/gaieb/en/opinion6.pdf; see also the draft report on pre-implantation genetic diagnostic and germ-line intervention from the International Bioethics Committee of the UNESCO, uses the following argument:  65. "An often-debated subject is line-drawing in case of the indications both for PGD and PD. So far all professional organisations in clinical genetics and reproductive technology and all advisory groups on bioethics have argued against lists of diseases that can be defined as severe enough to justify PGD or PD. The number of monogenic diseases alone exceeds 5,000 and nearly each of these has variants of different severity and clinical course. Also the same disease may be perceived differently by different couples depending on their family history, religious and socio-economic background, life situation and future expectations". UNESCO, 2003 paragraph 65:  Report of the IBC on Pre-implantation Genetic Diagnosis and Germ-line Intervention Rapporteur: Hans Galjaard SHS-EST/02/CIB-9/2 (Rev. 3) Paris, 24 April 2003 Original: English

http://portal.unesco.org/shs/en/file_download.php/1f3df0049c329b1f8f8e46b6f381cbd1ReportfinalPGD_en.pdf

[19] Wertz, DC, 1998"Eugenics is Alive and Well," Science in Context, Vol. 11, No 3-4, p. 493-510 

[20] <http://www.genetics-and-society.org/resources/cgs/2001_earthisland_hayes.html>. Similar to identical language can be found <http://www.genetics-and society.org/resources/cgs/200207_worldwatch_hayes.html>,  <http://www.gene-watch.org/programs/cloning/germline-position.html>, <http://www.hgalert.org/briefings/briefing1.PDF>  <http://www.hgalert.org/topics/hge/noToGE.htm><http://www.hgalert.org/topics/hge/geneTherapy.htm>

<http://www.hgalert.org/topics/hge/threat.htm> <http://www.hgalert.org/topics/hge/faq.htm><http://www.peterjepson.com/law/Citizen/cahge.htm><http://www.newmediaexplorer.org/sepp/2003/07/16/human_genetic_engineering.htm >   <http://www.medicine.mcgill.ca/mjm/v03n02/v03p126/v03p126fs.htm>  

[21]   Wolbring, 2002, The silenced targets written for the Institute of Science in Society, UK http://www.bioethicsanddisability.org/Thesilencedtarget.htm

[22] http://www.genetics-and-society.org/resources/cgs/2002_asrm_sex_selection.html

[23] See also UNESCO, 2003 Report of the IBC on Pre-implantation Genetic Diagnosis and Germ-line Intervention Rapporteur: Hans Galjaard SHS-EST/02/CIB-9/2 (Rev. 3) Paris, 24 April 2003 Original: English paragraph 96 <http://portal.unesco.org/shs/en/file_download.php/1f3df0049c329b1f8f8e46b6f381cbd1ReportfinalPGD_en.pdf >.  

[24] .http://www.genetics-and-society.org/resources/cgs/2002_asrm_sex_selection.html 

[25] Pennsylvania Consolidated Statutes Annotated, title 18, [189] 3204 (c), as amended November 17, 1989, P.L. 592, No. 68, [189] 2.o

[26] Article 12 of The Pre Natal Diagnostic Techniques (Regulation and Prevention of Misuse) Act of 1994 (India) sees point 277 at http://wcd.nic.in/CEDAW4.htm.

[27] Article 8 of The Act on Maternal and Infant Health Care (China), Renmin Ribao (Peoples Daily), October 28, 1994.See also Xin Mao and Dorothy C. Wertz (1997) “China’s Genetics Services Providers’ Attitudes Toward Several Ethical Issues: A Cross-Cultural Survey,” Clinical Genetics, 52: 100–109.

[28] Gesetz zum Schutz von Embryonen (Embryonenschutzgesetz ‑ ESchG), vom 13. Dezember 1990. BGBl. I 1990 S. 2746‑2748 (BGBl III 453‑19) Article 3 Verbotene Geschlechtswahl, http://www.bmgesundheit.de/rechts/genfpm/embryo/embryo.htm.

[29] In Turkey, the problem reached such proportions that the Ministry of Health has restricted clinical application of sex selection methods when there is no medical indication. See Çağri Kalaça and Ayşe Akin (1995) “The Issue of Sex Selection in Turkey.” Human Reproduction, 10(7): 1631–1632.

[30] HFEA, 1993 Human Fertilization & Embryology Authority Sex selection public consultation document p. 8 paragraph 38

[31] Act No. 56 of 1994 on the Application of Biotechnology in Medicine (Norway), Chapter 4: Preimplantation Diagnosis, Section 4(3): Sex Selection, and Chapter 5: Prenatal Diagnosis, Section 5(4): Information about the Gender of the Fetus.

[32] Bill C-13 for an Act respecting Assisted Human Reproduction. First reading, October 9, 2002. Available at http://www.parl.gc.ca/37/2/parlbus/chambus/house/bills/government/C-13/C-13_1/C-13_cover-E.html. See also an earlier attempt to draft an act on human reproduction in Canada, which did not complete the legislative process: Bill C‑47, for an Act respecting Human Reproductive Technologies and Commercial Transactions relating to Human Reproduction, 1996–97. Available at http://www.parl.gc.ca/bills/government/C-47/C-47_1/17946bE.html.

[33] Article 14 of the Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine (ETS No. 164). Signed in Oviedo, April 4, 1997. See http://conventions.coe.int/treaty/en/treaties/html/164.htm.

[34] Article 21 of the World Health Organization (WHO) (1999) Draft Guidelines on Bioethics, available at http://www.nature.com/wcs/b23a.html.

[35] PGD stands for ‘Pre-Implantation Genetic Diagnosis’. See International Bioethics Committee of the UNESCO (2003) Report of the IBC on Pre-Implantation Genetic Diagnosis and Germ-Line Intervention, SHS-EST/02/CIB-9/2 (Rev. 3), April 24, 2003 (Paris: United Nations Educational, Scientific, and Cultural Organization), Section 68. Available at http://portal.unesco.org/shs/en/file_download.php/1f3df0049c329b1f8f8e46b6f381cbd1ReportfinalPGD_en.pdf 

[36] Group of Advisers on the Ethical Implications of Biotechnology (GAEIB) (1996) The Ethical Aspects of Prenatal Diagnosis. Opinion of the Group of Advisers on the Ethical Implications of Biotechnology to the European Commission, No.6, February 20, 1996 (Brussels: The European Commission), available at http://europa.eu.int/comm/european_group_ethics/gaieb/en/opinion6.pdf; see also the draft report on pre-implantation genetic diagnostic and germ-line intervention from the International Bioethics Committee of the UNESCO, uses the following argument:  65. "An often-debated subject is line-drawing in case of the indications both for PGD and PD. So far all professional organisations in clinical genetics and reproductive technology and all advisory groups on bioethics have argued against lists of diseases that can be defined as severe enough to justify PGD or PD. The number of monogenic diseases alone exceeds 5,000 and nearly each of these has variants of different severity and clinical course. Also the same disease may be perceived differently by different couples depending on their family history, religious and socio-economic background, life situation and future expectations". UNESCO, 2003 paragraph 65:  Report of the IBC on Pre-implantation Genetic Diagnosis and Germ-line Intervention Rapporteur: Hans Galjaard SHS-EST/02/CIB-9/2 (Rev. 3) Paris, 24 April 2003 Original: English

http://portal.unesco.org/shs/en/file_download.php/1f3df0049c329b1f8f8e46b6f381cbd1ReportfinalPGD_en.pdf

[37] Sherwin argues that, "Unless there is evidence that women would agree to this practice if they were free of patriarchal coercion, we cannot treat it as an acceptable local custom, even if the majority of citizens in areas where it is customarily practiced now approves of it." 183 (p. 74)). According to Sherwin's criteria, sex selection in Asian cultures is wrong because it results from and contributes to the oppression of women. Sex selection is wrong even if the woman herself requests it without direct coercion from her husband or partner, because her request emanates from a coercive culture. Therefore, in this case the majority culture should not respect requests for sex selection and should not consider itself "ethnocentric" for doing so. Rejecting requests for sex selection does not denigrate an entire culture, only its oppressive aspects.” Sherwin, cited in Dorothy C. Wertz and John C. Fletcher (1993) “A Critique of Some Feminist Challenges to Prenatal Diagnosis,” Journal of Women’s Health, 2(2): 173–188. Quote directly after Reference 234 in online text: Available at:    

http://www.umassmed.edu/shriver/research/socialscience/staff/wertz/critique.cfm

[38] Wertz, D., C & Fletcher, J.,, C. (1998).  Ethical and Social Issues in Prenatal Sex Selection: A Survey of Geneticists in 37 Nations. Social Science and Medicine Vol 46 (2) p265 Table 10: Available online http://www.umassmed.edu/shriver/research/socialscience/staff/wertz/sexselecttable.htm#Table10 

and the whole text available at http://www.umassmed.edu/shriver/research/socialscience/staff/wertz/sexselect.cfm  

[39] Edward Stein (1998) “Choosing the Sexual Orientation of Children?” Bioethics, 12(1): 1–24. see also Gregor Wolbring (2003) Disability Rights approach to Bioethics in Journal of Disability Policy Studies Volume 14 (3) p 154-180 (in print); Gregor Wolbring (2000) “Science and the Disadvantages” an occasional paper of The Edmonds Institute I.S.B.N. 1-930169-12-4. Available at http://www.edmonds-institute.org/wolbring.html;

[40] See footnote 4

[41] The view that society will never support and accept disabled people with their variation of being is expressed by disabled people and non-disabled people such as geneticists alike Nippert and Wolff,  1999 Ethik und Genetik:Ergebnisse der Umfrage zu Problemaspekten angewandter humangenetik 1994-1996 Ethics and Genetics Survey to problematic aspect of applied genetics 1994-1996, page 58, table 13 in Medgen 11 p53-61

[42] Wolbring, G., 2003, "Confined to Your Legs," in A. Lightman, D. Sarewitz,and C. Desser (eds.), Living with the Genie:   Essays on Technology and the Quest for Human Mastery (Washington, DC:  Island Press).

[43] see footnote 41

[44] Ghai, Anita. (2002) "Disabled Women : An excluded agenda of Indian feminism" Hypatia 16(4)fall:34-52    see also final document from the European social forum Call of the European Social Movement 12/11/2002 http://www.fse-esf.org/article.php3?id_article=331 states “We commit ourselves to enlarge our networks for the next year in the following mobilizations and campaigns : Against neoliberalism
Against war
Against racism
Against sexism and homophobia
For rights and "another Europe"

No mentioning of disabled people or able-ism in the text. Again a hierarchy of victims is ensured.  For more examples of this exclusion see http://www.bioethicsanddisability.org/rational.html

[45] The able-ist views evident in the debate also promote the development and acceptance of new genetic and non-genetic technologies[45], which promise to increase abilities again by labeling the intervention as a ‘medical intervention’ further diminishing our acceptance and accommodation of people seen as having ‘subnormal’ abilities especially if they defend their state of being as equal to the ‘normal people’. To see oneself as equal will be see as pretentious and psychological maladjusted. If the views of disabled people do not fit others they are discarded or vilified.

To quote from an recent Guardian (UK) article,” In recent years the militant disability movement has  developed a whole new confident and strident identity - no more pathetic cripples pleading in soppy charity ads, but a strong demand for equal rights in the tradition of the battles for black, women's and gay rights. After women's pride, black pride and gay pride, proud-to-be-disabled seems to make sense too. But each of these four campaigns is different. Each group's identity, cohesiveness, and claim to victimhood is based on markedly different circumstance. Disability campaigners have over- identified with other civil rights issues, talking as if they were a race or a gender”. 

At the Tenth “Genetic Technology and Public Policy in the New Millennium” symposium, Daniel W. Brock, a bioethicist at the National Institutes of Health, gave a presentation entitled “Genetic Testing and Selection: A Response to the Disability Movement’s Critique.” In the presentation, Brock told the audience that “Our notion of how good a person’s life is [isn’t] fully determined by their own subjective self-assessment.” Quoted in Roberto Rivera y Carlo (2002) “Targeting the Disabled,” Boundless, December 5, 2002, available at http://www.boundless.org/2002_2003/features/a0000685.html. Compare also John Harris (2000) “Is There A Coherent Social Conception of Disability?” Journal of Medical Ethics, 26(2): 95-100 <http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=10786318&dopt=Abstract; Solveig Magnus Reindal (2002) “Disability, Gene Therapy, and Eugenics: A Challenge to John Harris,” Journal of Medical Ethics, 26(2): 89–94 http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=10786317&dopt=Abstract

[46] Sutton v United States, 1998 At Issue: Whether nearsightedness that can be corrected with glasses or contact lenses is a "disability" under the Americans With Disabilities Act.

Decision: The court ruled that the Americans With Disabilities Act does not cover people whose disabilities can be sufficiently corrected with medicine, eyeglasses or other measures.

 <http://www.washingtonpost.com/wp-srv/national/longterm/supcourt/1998- 99/sutton.htm> full text SUTTON et al. v. UNITED AIR LINES, INC.

certiorari to the united states court of appeals for the tenth circuit

No. 97-1943. Argued April 28, 1999--Decided June 22, 1999

<http://caselaw.lp.findlaw.com/cgi-bin/getcase.pl?court=US&vol=000&invol=97-1943>, Murphy v. United Parcel Service At Issue: Whether medication or other mitigating measures should be considered in assessing if an individual is "disabled" under the terms of the Americans With Disabilities Act. Decision: The justices ruled that the condition the petitioner suffers and controls with medication is not considered "disabling" under the Americans With Disabilities Act. The condition and medication preclude him from performing only a particular job and do not substantially limit him in employment.

<http://www.washingtonpost.com/wp-srv/national/longterm/supcourt/1998-99/murphy.htm> MURPHY v. UNITED PARCEL SERVICE, INC.

certiorari to the united states court of appeals for the tenth circuit

No. 97-1992. Argued April 27, 1999--Decided June 22, 1999

<http://caselaw.lp.findlaw.com/cgi-bin/getcase.pl?court=US&vol=000&invol=97-1992>, Albertson's v. Kirkingburg At Issue: Whether a truck driver blind in one eye who received a waiver from Department of Transportation vision standards is disabled for the purposes of the Americans With Disabilities Act. Decision: The justices voted unanimously that the plaintiff in this case was not protected by the Americans With Disabilities Act. They ruled that employers who set job qualifications based on federal safety standards do not have to overlook those standards when a worker obtains a waiver from the federal agency. <http://www.washingtonpost.com/wp-srv/national/longterm/supcourt/1998-99/albertsons.htm> ALBERTSONS, INC. v. KIRKINGBURG

certiorari to the united states court of appeals for the ninth circuit

No. 98-591. Argued April 28, 1999--Decided June 22, 1999 <http://caselaw.lp.findlaw.com/cgi-bin/getcase.pl?court=US&vol=000&invol=98-591>   

[47] See Thursday, September 19, 2002 The here and now By ANTHONY THANASAYAN scroll down to the article at http://www.bioethicsanddisability.org/Ant/antsept2002.html Thursday, July 17, 2003Struggle to be free By ANTHONY THANASAYAN http://www.bioethicsanddisability.org/Ant/antjuly2003.html

 

[48] In Diederich, N und Maoger D.,lespersonnes handicapées face au diagnostic prénatal : éliminer avant la naissance ou accompagner ? Editions ERES near Toulouse (Ramonville Ste Anne) the study found that many disabled people indeed believe that in the absence of a social cure it is better not to be born with their biological reality or have it fixed.

[49] See footnote 21