11/22/2016 1

DISABILITY COMPENSATION: THE CHALLENGES OF TECHNOLOGICAL FIXES

Dr. phil. Katja Stoppenbrink, LL.M. (Köln/Paris 1)

7th NTA CONFERENCE 2016, Bonn

PANEL 5: KONZEPTIONELLE HERAUSFORDERUNGEN FÜR DIE TECHNIKFORSCHUNG II. 17 November 2016 (3 – 3.30 pm), Universitätsklub, Room: Josef Alois Schumpeter

SETTING THE SCENE

AVANT-PROPOS

The term technological fix is ubiquitous:

it is found everywhere in commentaries on technology.

Perhaps that is why the phrase is so hard to define…

It has become a dismissive phrase, most often used to describe a quick, cheap fix using inappropriate technology

that creates more problems than it solves […]

Rosner, Lisa (ed.) (2004):

The Technological Fix. How People Use Technology to Create and Solve Social Problem.

New York: Routledge, p. 1.

OVERVIEW

Introduction

I. What is a ‘technological fix’?

II. Conceptualising and exploring technological fixes to disability

1. Technological fixes to compensate disability

2. Technological fixes to eliminate disability

III. Challenges: conceptual – ethical – social

1. From the medical to the social model of disability – and backwards forward to a compensational approach?

2. What does it mean to compensate for disability? Avoiding an egalitarian imbroglio

IV. Coda

References

I. WHAT IS A ‘TECHNOLOGICAL FIX’?

The expression is primarily deployed

i. in an attempt to unmask or debunk presumed ideology and

ii. to critize technology

iii. in the context of issues such as climate change, mining, agro-bio-technology and the like, in short: when human (technological) interventions into ‘the natural’ or ‘the wild’ are concerned,

iv. when technological solutions to a given problem are taken to be a ‘short-cut’

v. understood to be ethically unjustified or otherwise ‘illicit’.

II. TECHNOLOGICAL FIXES TO DISABILITY

1. Technological fixes to compensate disability

“Toute la conduite de notre vie dépend de nos sens,

entre lesquels celui de la vue étant le plus universel et le plus noble, il n’y a point de doute que les inventions qui servent à augmenter sa

puissance ne soient des plus utiles qui puissent être.” |

The entire conduct of our life depends on our senses, among these vision is the most universal and the noblest, so there is no doubt that

all interventions with the aim of enhancing its power are among the most useful that can be.

[René Descartes (1637): La dioptrique; my translation, K.S.]

II. TECHNOLOGICAL FIXES TO DISABILITY

Conrad von Soest (1403): „Brillenapostel“; http://www.badwildungen.de/altar/foto6.html

II. TECHNOLOGICAL FIXES TO DISABILITY

Sandberg, Anders (2012): The New Blade Runner. In: New Scientist 215 (2877):26–27.

II. TECHNOLOGICAL FIXES TO DISABILITY

2. Technological fixes to eliminate disability

Jiang, Jun, Jing, Yuanchun, Cost, Gregory J. et al. (2013): Translating dosage compensation to trisomy 21.

In: Nature 500, 296–300 (15 August 2013)

II. TECHNOLOGICAL FIXES TO DISABILITY

“Finally, the more forward-looking implication of this work is to bring Down’s syndrome into the realm of consideration for future gene therapy research.

Although development of any clinical gene therapy is a multi-step process, any prospect requires that the first step, functional correction of the underlying genetic defect in living cells, is achievable.

We have demonstrated that this step is no longer insurmountable for chromosomal imbalance in Down’s syndrome.”

Jiang, Jun, Jing, Yuanchun, Cost, Gregory J. et al. (2013):

Translating dosage compensation to trisomy 21.

In: Nature 500, 296–300, at 300 (15 August 2013)

III. CHALLENGES: CONCEPTUAL – ETHICAL – SOCIAL

1. From the medical to the social model of disability – and back and forward to a compensational approach?

Challenges

- cultural challenge of societal inclusion of people with a disability

- challenges in the interpersonal approaches between people with and without disability (‘social inclusion’)

- challenges situated in the financial and technical compensation regimes

>> fair & equal access of people with a disability to current and future technologies for their support

>> challenge of social recognition and of distributive justice

III. CHALLENGES: CONCEPTUAL – ETHICAL – SOCIAL

Objections:

A. Degradation/devalorisation objection

The aim to eliminate certain impairments implies a degradation or devalorisation vis-à-vis the individuals affected by these impairments.

Premise 1: impairments are a bad thing

Premise 2: we should try and cure & eliminate these impairments

Conclusion: >> implies degradation of people with impairments???

My claim is, however, that one can free of self-contradiction hold both views at the same time, i.e. that

(i) a world without physical or mental impairments is (ceteris paribus) a better world than one in which they do exist, and that

(ii) people with these impairments have human dignity and deserve recognition and respect such as any human being.

So the degradation objection does not hold.

III. CHALLENGES: CONCEPTUAL – ETHICAL – SOCIAL

Objections:

B. Technological fixes imply a return to the medical model of disability

Consider this quotation from an article on technological fixes:

Technological problems are much simpler than social problems; they are easier to define and [sic!] identify solutions.

And technological problems do not have to deal with the complexity and unpredictability of human behavior.

(Dane Scott 2011)

Again, it seems, the medical (here: technological) approach &

the social approach to disability are brought into position against each other.

III. CHALLENGES: CONCEPTUAL – ETHICAL – SOCIAL

Article 1 section 2 of the UN Convention on the Rights of Persons with Disabilities (UNCRPD):

Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.

— conjunction of both impairments & societal barriers

— bridge between the medical & the social model

— complex, two-dimensional concept of disability

>> ‘model talk’ is not helpful & to be overcome!

III. CHALLENGES: CONCEPTUAL – ETHICAL – SOCIAL

2. What does it mean to compensate for disability? Avoiding an egalitarian imbroglio

– Jonathan Wolff (2009) distinguishes

four forms of disability compensation (= DC): 1. Cash compensation,

2. personal enhancement,

3. status enhancement,

4. targeted resource enhancement.

– Wolff argues for (4) = cash benefits to be used for

certain specified purposes.

III. CHALLENGES: CONCEPTUAL – ETHICAL – SOCIAL

‘Compensation’ = different conceivable modes …

— … ersatz ? (= functionally equivalent but ontologically aliud to make up for lacking

function = technological fix)

— … indemnity? (= payment to make up for loss in terms of quantified financial harm = monetary fix)

— … remuneration? (= payment for prior performance , achievement or service rendered (“do ut des”) = financial recompense)

Compensation requires a damage to be repaired/an effected performance to be made good for (= make the balance even!)

>> Implications for ‘disability compensation’?

III. COMPENSATION & JUSTICE: EGALITARIAN IMBROGLIO

Egalitarians, e.g. in the vein of legal philosopher Ronald Dworkin (1931-2013), think it morally & socially appropriate (= just) to attain equality of welfare, resources or opportunities...

Luck egalitarians … — distinguish brute luck & option luck,

— require cash compensation for brute luck (e.g. the natural lottery),

— however not for option luck (self-inflicted harm, harms from deliberately chosen risks).

Luck egalitarianism implies … — claiming cash compensation for birth defects,

— holding unjustified compensation for the consequences of culpably caused accidents,

— holding unjustified compensation if an insurance could have been contracted prior to the loss or harm incurred (insurability >> sphere of responsibility).

This is highly counter-intuitive.

III. COMPENSATION & JUSTICE: EGALITARIAN IMBROGLIO

Thought experiment: the Stradivari challenge 1. Should persons with a disability be given more resources? – Yes. 2. Should persons with an expensive taste have more resources? – No. (?) 3. How about the person who, instead of spending the money on a wheelchair, prefers to buy a violin? Isn’t this an expensive taste as well? – If we say “No!” & opt for an objective list approach to disability compensation… – … we would not take into consideration individual preferences in equalizing resources (& well-being).

… cf. contra welfare theories of equality & contra Dworkin: Jonathan Wolff & his proposal for a “targeted resource enhancement”.

(Dworkin, Ronald (2000): Sovereign Virtue. The Theory and Practice of Equality. Cambridge, Mass.: Harvard University Press, pp. 59-62)

IV. CONCLUSION

Normative upshot

of my considerations on the challenges of technological fixes:

1. Proposing a neutral notion of ‘technological fixes’.

2. Welcoming technological fixes to compensate for disability & to (genetically) eliminate impairments (if possible at a justifiable risk).

3. Overcoming the disability models divide.

4. Compensating for disabilities.

5. Following Jonathan Wolff‘s proposal for a “targeted resource enhancement” (contra Dworkin et al.)

>> fair & equal access to technology

>> social recognition and of distributive justice

THANK YOU FOR YOUR ATTENTION!

I am happy to receive your comments & criticisms, remarks & suggestions … … straightaway or later on:

Dr. Katja Stoppenbrink, LL.M. (Köln/Paris 1) katja.stoppenbrink@uni-muenster.de

Kolleg-Forschergruppe “Theoretische Grundfragen der Normenbegründung in Medizinethik und Biopolitik“ | Centre for Advanced Study in Bioethics

Westfälische Wilhelms-Universität Münster Geiststraße 24-26 D-48151 Münster

Germany

www.normenbegruendung-in-der-bioethik.de www.facebook.com/casbioethics

REFERENCES Descartes, René (1667 [1637]): La dioptrique. In: idem: Discours de la methode: pour bien

conduire sa raison, & chercher la verité dans les sciences: Plus La dioptrique, et Les meteores. Qui sont des essais de cette methode. Paris: Girard; https://archive.org/details/discoursdelamet00desc

Dworkin, Ronald (2000): Sovereign Virtue. The Theory and Practice of Equality, Cambridge/Mass.: Harvard University Press.

Etzioni, Amitai & Remp, Richard (1973): Technological shortcuts and social change. New York: Russell Sage Foundation.

Jiang, Jun, Jing, Yuanchun, Cost, Gregory J. et al. (2013): Translating dosage compensation to trisomy 21. In: Nature 500, 296–300 (15 August 2013), doi:10.1038/nature12394, http://www.nature.com/nature/journal/v500/n7462/full/nature12394.html

Rosner, Lisa (ed.) (2004): The Technological Fix. How People Use Technology to Create and Solve Social Problem. New York: Routledge.

Sandberg, Anders (2012): The New Blade Runner, In: New Scientist 215 (2877):26–27.

Scott, Dane (2011): The Technological Fix Criticisms and the Agricultural Biotechnology Debate. In: Journal of Agricultural and Environmental Ethics 24 (3):207–226.

Stoppenbrink, Katja (2015). Teilhabe und Empowerment. Teilhabe versus Empowerment? Inklusive Gesellschaft als Kulturaufgabe. In: Juridikum: Zeitschrift für Kritik - Recht - Gesellschaft (Wien) (3), 281–290 .

Wolff, Jonathan (2009): Disability, Status Enhancement, Personal Enhancement and Resource Allocation, in: Economics and Philosophy 25 (1), 49–68.

.

BACK-UP SLIDES

(UNQUESTIONED) EGALITARIAN PRESUPPOSITIONS

(Luck) Egalitarianism implicitly presupposes a certain number of claims:

1. Humans are (normatively) equal & should be treated with equal consideration.

2. Humans are responsible for their fate.

3. Disability by birth is unjust. Compensation

4. Forms of disability which could have been prevented are self-inflicted harm & should not to be compensated. Not all factual differences & inequalities are unjust.

Who counts as disabled? Personal scope of brute luck?

“Life is what you make of it.” ? [ “seines Glückes Schmied sein”|“fabrum esse suae quemque fortunae”, Sallust: epistolae ad Caesarem (I, 1, 2); carmina Appius Claudius Caecus]