Not All that Shines Is Gold

Equality is one of the most popular and celebrated ethical principles. All international protocols and conventions on human rights, from the Universal Declaration of Human Rights (1948) to the most recent ones, stress “the equal and inalienable rights of all members of the human family,”^{Footnote 5} regardless of any arbitrary feature like gender, race, religion, age, and so on. The rights, equal value, and needs of people with disabilities have also been increasingly recognized. A number of acts and conventions have been issued to protect the human rights of people with disability, especially since the 1990s, such as the Equality Act of 2010^{Footnote 6} and international conventions and resolutions by organizations such as the UN and UNESCO.^{Footnote 7}

Concepts like equality, however, have a distinct character: they are abstract and “fumigant.” Unless we clarify their meaning, they could lead us to conclusions that we did not mean to suggest.

For example, it could be claimed that it is for the sake of equality that we should endeavor to provide cure and rehabilitation for those with spinal cord injuries. But, sadly, spinal cord injuries cannot be repaired. If we were (or had to be) primarily concerned with equality, and if equality had to be served by making people physically equal, then we would have a moral obligation to disable “normal” people. Given that we cannot repair spinal cord injuries, but we can injure “healthy” spinal cords, we would have a moral obligation to disable everyone, so that the differences in physical abilities would be corrected and equality would be restored. This “repugnant conclusion” shows that equality should not necessarily be a primary concern (at least, with equality meant as equality in physical capacities). Indeed, it may be argued that it is preferable to maintain inequality.

People who claim (in line with Tamburini and Tännsjö) that those who are less physically gifted (women and people with disability, for example; we may also include elderly people, and the list might grow) should be offered the chance to obtain the attributes of those who are more physically gifted presuppose that some attributes, namely the attributes belonging to the latter group, are preferable. There is nothing wrong with believing that some things are better than others, but this attitude is not egalitarian. Indeed, it is antiegalitarian in that it implies that some attributes and ways of being are better and some are worse (and not all equally valuable).

What Is Equality?

Equality has a strong intuitive appeal, and many in principle agree that equality is important and should be respected. However, as Ronald Dworkin pointed out, equality is also a mysterious ideal.^{Footnote 8} There is wide disagreement on how equality should be understood. Tujia Takala stressed that this disagreement is well exemplified in political campaigns. She in particular discussed the notion of justice, but what she said can validly be applied to equality. She writes:

I have argued elsewhere that not only is there no agreement on equality and other shared ethical principles, but there cannot be.^{Footnote 10} However, some clarity is possible, and some ways of understanding equality are more plausible than others.

For centuries philosophers have debated the notion of equality: what it means and what it means to treat people according to equality. Jean Jacques Rousseau gave a decisive contribution to this debate. He pointed out that the notion of equality may have different meanings, but it is important to understand that saying that men are equal means not that they are physically equal (“in strength or intelligence”) but that they are formally equal (“in rights and by convention”).^{Footnote 11} In his Du Contract Social, we read: “The fundamental covenant will substitute . . . a moral and legitimate equality, to the physical inequality that nature may have set up among men, and that men, who may be unequal in strength or intelligence, become equal by convention and legal rights.”^{Footnote 12}

Reducing the physical differences among people is not an intervention that favors equality. It might favor other things—in particular, it might promote the presence and flourishing of the attributes that we think are preferable, but not equality. Thus, when we say that we wish the disabled could walk, we do not make a proposition in favor of equality: we make a proposition in favor of what we think a good life is. And when we say that we wish treatments for illnesses and disabilities were available (so that people could choose whether or not to receive those treatments), we make a proposition based not on the principle of respect for equality but on the principle of respect for people’s autonomy. Implicitly, we are saying that people should be able to choose what a good life is for them, and, the means being available, they should be able to choose whether or not to use them.

What Is Disability: At the Intersection between Body and Society

Debates on disability have been very animated in the last fifteen years. They have covered epistemological issues about what disabilities are, moral issues on whether it is right or wrong to cure disabilities (or to intentionally give birth to a child with a disability), and political issues on how people with disabilities may be best integrated into society.

These three types of discourses normally intersect with one another, and many different views can be registered on any of these issues. The so-called social model of disability has been increasingly influential in philosophical, sociological, and political debates. This model stems from a critique of the biological or medical model of disability, which presents disabilities as departures (by defects) from species-typical functioning,^{Footnote 14} or as harmed conditions.^{Footnote 15}

According to the social model, “it is not individual limitations, of whatever kind, which are the cause of the problem but society’s failure to provide appropriate services and adequately ensure the needs of disabled people are fully taken into account in its social organisation.”^{Footnote 16} Many currently agree on this model and argue that disabilities are social constructs.^{Footnote 17} What disables people is often a (disabling) environment, which either refuses to consider those “different abilities” as important to the richness and variety of humankind or is negligent in providing means to ensure full participation of minorities in the society.^{Footnote 18}

The debate has had a crucial impact on political agendas and even on medical classifications. For example, the World Health Organization has replaced the original classification (International Classification of Impairments, Disabilities and Handicaps [ICIDH; 1980])^{Footnote 19} with the International Classification of Functioning, Disability and Health (ICF; 2001).^{Footnote 20} This more recent classification differs from the previous one in that it places disability “at the intersection between the biological body and the social and institutional structures.”^{Footnote 21} In other words, it does not consider disability primarily as the malfunctioning of a biological body; rather, it sees disability as a problem that is at the same time social and biological.

Consistently with this model, disability rights exponents often insist that disabilities are only “different abilities.” The nature and extent of their difference and disability are partly circumstantial.

My friend K, who is quadriplegic, once went to the insurance office to pay for a premium and found that the company had not put a ramp of access to the office. When he complained about it, the insurance agent said he would have been happy to send down a couple of men to pick him up. My friend yelled that he was not “a bag of potatoes.” He said to me that on that occasion he was disabled by their inconsideration and lack of care, not by his injury. He said: “So far as medical technologies, or technologies of any sort, simple like a ramp or more complex like this electric wheelchair, allow me to do the same things that you can do, if I am denied the possibility to use those technologies I am not disabled because of my injury, but because I am denied those aids.”

In reporting this, I do not pretend to resolve the vexed question of what disabilities are. I mean to emphasize that my friend and I can both access the insurance office, if a ramp is provided. Our wishes and preferences can equally be satisfied without treating his injury. It is not necessary to make us physically equal to treat us as equals. Giving a ramp to him and stairs to me is treating us differently, but it is giving us both the means to do what we want. We do not need to treat people the same to respect equality, and we also do not need to render people as similar as possible in order to prevent unjust discrimination. The argument also works the other way around: interventions aimed at rendering people as similar as possible are not egalitarian interventions.

The fact that developing treatment of disabilities is not an egalitarian move does not mean that it is undesirable. Of course, I do wish that treatment for spinal cord injuries will be available very soon. But I wish this for two reasons, which have little to do with equality:

1. 1) I believe that it is better to be able to walk. This is a value judgment based on axiological categories—what is good and what is bad, or what is better and worse. When I claim that I wish some treatments were available, I am implying that there are conditions, states of being, and circumstances in which it is preferable to live and in which life is more enjoyable. I am not making an egalitarian claim. I am saying that there are ways of being and life conditions that are better than others. I am saying that people would be advantaged if they had some physical attributes and characteristics. Wishing them to have these characteristics is in no way a reflection of my belief in equality. It is a reflection of my beliefs in what it is preferable to have.

2. 2) I believe that my friend would want to go back to walking. Of course others might have different views, and it is possible that some people with disabilities would never want to live without their disability, because this is what identifies them as persons. Indeed, some people argue that it is better to live with their disability and would not want to change.^{Footnote 22} Some people instead would want to receive treatment for what they consider a harmed or impaired condition. When I wish that my friend could fulfill his desire to go back to walking, my wish has little to do with my belief in equality. It has to do with my belief in each individual’s freedom to determine what is good for him or her (autonomy or self-determination).

“A World of Equals, Because All Are Strange”

The song “Cencio” (based on a real story) narrates about Cencio, an adolescent affected by dwarfism, who, upset by the differences between him and his life and the lives of his peers, which are full of love stories, women, and adventures, dreams to live and work in a circus.

Where could one run, to feel real?

Where could one go, not to feel different?

He dreamt of the circus, upside-down universe

World of equals, because all are strange

Our usual twisted reality

That Heaven without giants or dwarfs.^{Footnote 23}

Cencio. Music: Guccini F, Biondini JC. Text: Guccini F © 1990 EMI Music Publishing SRL Italy.

It is likely that, in a world of people with disabilities, people with disabilities would not feel stigmatized for their disability. Sarah, a student who moved from a mainstream college to a special needs college, explains: “I was really looking forward to coming here because at mainstream school I did get picked on a bit but most of the time the problem was people just make you feel left out. But here you don’t feel left out because everyone’s got a disability.”^{Footnote 24}

It is also likely that people with disabilities are perceived as somehow “different,” and that social perception and stigma might have important psychological consequences for the persons themselves. In the poem below, by Edgar Lee Masters, the dwarf Judge Selah expresses the bitterness of being perceived as disabled, ridiculous, and insignificant by the “giants,” and the way this affects his search for affirmation of himself, over the heights of others.

Judge Selah Lively

Suppose you just stood five feet two,

And had worked your way as a grocery clerk,

Studying law by candle light

Until you became an attorney at law?

And then suppose through your diligence

And regular church attendance,

You became attorney for Thomas Rhodes,

Collecting notes and mortgages,

And representing all the widows

In the Probate Court? And through it all

They jeered at your size, and laughed at your clothes

And your polished boots? And then suppose

You became the County Judge?

And Jefferson Howard and Kinsey Keene,

And Harmon Whitney, and all the giants

Who had sneered at you, were forced to stand

Before the bar and say “Your Honor”—

Well, don’t you think it was natural

That I made it hard for them?^{Footnote 25}

It is clear that if we all were the same size, color, religion, gender, and race, there would be little ground for discrimination. However, eradication or cure of disability is not an intervention against discrimination or in favor of equality, in the same way as changing the pigmentation of the skin is not an intervention against racism.

When Michael Jackson allegedly altered his skin color, he resolved, maybe, his own conflicts, but he didn’t resolve social conflicts. He became happier, hopefully, and there is nothing unethical in this, but he didn’t resolve discrimination against black people.

Here one could object: Michael Jackson didn’t eradicate racism because he is an isolated case, but if all black people chose to become white and alter their racial features, then racism against the group would be eradicated. Likewise, if there were no disabled people, there would be no discrimination against the disabled.

Here the logic is stringent, but unfortunately the subject is mistaken. It is not racism, for example, that would be eradicated: it would be black people that would be eradicated. This is an odd way to be egalitarian. In fact, this is precisely what racism is: it is the eradication of that particular feature that is considered undesirable by some.

What pretends to be an egalitarian claim is in fact a claim based on one ideology of what it is good to have, what the best life is. Judgments on the undesirability of having disabilities are axiological judgments on how life is best, and not claims of equality.