You’ve certainly heard of Le Corbusier, the eminent Swiss-French architect, urban planner, and champion of the “International Style” in modern design, with well over a dozen sites in three continents bearing his signature on the UNESCO’s world heritage list, showcasing his functionalist – and occasionally playful – imprint in a range of structures, from residential buildings and factories to art galleries and churches.
In 1948, Le Corbusier would establish himself as an ergonomics guru of sorts, with an impactful treatise curiously titled The Modulor, a textbook meant to universally harmonise the built environment with human proportions.
Reminiscent of Leonardo da Vinci’s study of the “Vitruvian Man” – an idealised human figure first introduced under Augustus Caesar by the Roman engineer, Vitruvius, in his guide De architectura–Le Corbusier’s opus on body-meets-world proportionalities naturally needed a modern frame of reference to measure against, a normative homo-sapiens of today, a “regular Joe” if you will, which he would eventually size out at six-feet-tall (183cm), with the belly button clocking at 3.7 feet (113cm) from the ground.
These Corbusian calculations, which draw on well-known rational scales such as the “golden ratio” and the “Fibonacci sequence,” had at one intriguing moment nearly benefited from the arithmetic input of non-other than Albert Einstein.
“I had the pleasure of discussing the ‘Modulor’ at some length with Professor Albert Einstein at Princeton,” Le Corbusier wrote of his encounter with the legendary physicist during a 1946 trip to New York. “At one point, Einstein took a pencil and began to calculate. Stupidly, I interrupted him, the conversation turned to other things, the calculation remained unfinished.”
Nonetheless, modern urbanists and interior decorators will take cue from The Modulor, practically standardising the dimensions of everything from doors, stairs, phone booths, and benches, to countertops, desks, dining tables, and chairs, with much practical success overall, yet in striking negligence of the multitudes trailing at either end of the bell curve: the amputees and impaired of the World War that had just ended; the vast majority of women worldwide; and, more generally, persons who simply happen to have a markedly Modulor-divergent body, whether due to genes, age, chance, or disability.
Cut to here and now: a grey busy day in September at Palais des Nations, an edifice that, coincidentally, Le Corbusier had desperately wanted to design as a thumping modern landmark back in 1927 but was bitterly outbid by the guy who had just clinched the contract to refurbish Geneva’s central train station, Cornavin, in a riveting conservatism-beats-innovation story worth a magazine feature of its own.
Anyway, here we are, during one of those go-go-go lunch breaks where you end up eating a latte. I’m getting ready to interview Rosa Idalia Aldana Salguero, the President of the Little People Association of Guatemala and a member of the Committee on the Rights of Persons with Disabilities (CRPD), a UN watchdog composed of 18 independent, no-nonsense experts who both monitor and mentor countries on their disability-rights obligations.
We shake hands warmly and, as I’m setting up the recording, I see Rosa deftly climb onto the chair like it was a small obstacle, one that she had overcome all too often and that has by now become all too familiar.
Standing at well below four-feet-tall (107cm), Rosa, who holds a PhD in Strategic and Social Communication and multiple roles within Guatemalan and Latin-American civil society, is visibly far from being optimally served by the Modulor ratios. Like another estimated 650,000 people around the world, she has achondroplasia (or “short-limbed dwarfism”), a condition caused by an abnormality of bone growth, occurring in one in 20,000 to 30,000 live births, according to the US-based National Organisation for Rare Disorders. The resulting short stature makes the built environment, transportation, and furniture significantly out of proportion for her, even at the United Nations.
“I know firsthand the discrimination and invisibility that all persons with disabilities live,” Rosa wrote four years ago in her UN bio. “Therefore, I fight every day for our rights and our space in this world.”
Turning 50 next year, with over three decades of activism behind her, Rosa is a force of nature with twinkling, sociable hazelnut eyes behind purple-framed glasses, and a soft, engaging voice, even when touching on sensitive issues.
First, Rosa doesn’t like the terms “dwarf,” “disabled,” or “patient,” which are used in various circles – including by concerned families – to describe persons of short stature. She prefers medically grounded terms, like “a person with achondroplasia,” or compact acronyms like “ADEE,” which in her native Spanish includes a range of other skeletal conditions, with no stigmatising denotations. (A quick tour online shows that civil society hasn’t agreed yet on other descriptive terms like “short person” or “little person,” which are both used but inconsistently.)
Second, Rosa would like the focus to move beyond the language trap and the medical-only approach, across disabilities. “We need, obviously, specific medical services; and doctors, parents, and even we ourselves sometimes, must stop referring to [persons] as ‘patients’,” Rosa notes. “But, over the years, I have explained, at length, that we need to shift gears and insist more on education, training for employment, and Article 8 on awareness-raising,” she says, referring to the UN Convention on the Rights of Persons with Disabilities.
Third, Rosa has had a completely normal childhood. “I loved school, I loved studying, and I enjoyed being around people,” she remembers. “Obviously, there would be the occasional stare from people who didn’t know me, sometimes asking questions. But truth be told, we hear quite a bit about bullying in schools, yet I have to say that I was never bullied.”
Still, in Rosa’s case, even if you’re not bullied by people, you will be bullied by design. The push button on the water dispenser is too high for her reach, and so is the selection panel on the coffee machine, not to mention the toilet seat, the washbasin, the hand dryer, the door handle to her hotel room, among a plethora of other Modulor lapses that the UN mitigates by providing her with a personal assistant.
In a powerful twist that is less droll than indicative of character, Rosa once picked a blind person for the role. “I remember, last year, I came here with a blind guy as my assistant. And I remember another colleague, who is blind, asking me: ‘Why? How? He’s blind!’ And I answered him: ‘Why not!’,” Rosa recalls. “This experience was very important to me because I really wanted to show everyone [that we can do it].”
Rosa and I were sitting just 10 steps away from Room XVII, a 1,600m2 conference hall that had been entirely renovated in 2016 by an Iranian-Swiss interior architect, named Siavosh Adeli, and furnished with designer seating by the Italian leather brand MatteoGrassi, on a reported $22-million donation from the UAE, thereby giving the hall a nickname – “Emirates Room” – which never quite took off.
It’s inside this heritage-cum-tech microcosm that Rosa and her colleagues do their magic. Perched from my interpretation booth overhead, facing a galloping horse immortalised in energetic neon calligraphy on the opposite wall, I’ve observed multiple country delegations as they entered with an air of solemnity to face a total of six hours of pointed questions from these custodians of the Convention on the Rights of Persons with Disabilities (CRPD).
Delegates would walk down the room’s sprawling velvet-like carpet, patterned in wavy pumpkin-and-amber colours mimicking Arabia’s undulating desert sand, to take their seats on the pearlescent furniture, before the gavel drops and the grilling starts.
Here, you can’t mistake the distinctive voice of Muhannad Alazzeh, a tall, straight-shooting expert from Zarqa, Jordan, a self-proclaimed critic of extremist thought and the first person with a disability to ever occupy a Senate seat in the Hashemite Kingdom’s parliamentary history.
Muhannad became legally blind at age 10, after some years of being able to read and write with thick-lens glasses and special lighting. Upon graduating high school in the late 1980s, he would brave 14 years of living with blindness away from home and family to achieve his youth dream of pursuing studies in Egypt.
Now a holder of a PhD in Comparative Criminal Law from the University of Alexandria and a well-connected advocate within international civil society, Muhannad has gone on to play key policy roles for the disability movement in Jordan, decisively helping in the drafting and adoption of, inter alia, the country’s National Strategy on Accessibility, in 2019, and the National Law on the Rights of Persons with Disabilities, two years prior.
“It was the first law in the region ever to be based on anti-discrimination methodology,” Muhannad tells me, with his personal assistant sitting by his side, as he needs a hand to find his way to his seat in Room XVII, given the lack of tactile markings. “And there was, I would say, resistance to particular articles like ‘deinstitutionalisation’, for example, and, of course, ‘legal capacity’.”
These are two delicate areas where too many countries, irrespective of income or politics, fail the CRPD test. In disability-rights parlance, “deinstitutionalisation” refers to the obligation by states, inferred particularly from Article 19 on “living independently and being included in the community,” to discharge persons with psychosocial disabilities from special – usually psychiatric – institutions where they’re prevented from living in a normal social setting. (States usually counter-argue that this is easier said than done, especially in cases where the person can be harmful to themselves or to others.)
As to “legal capacity,” under Article 12 on “equal recognition before the law,” it refers to the obligation to ensure that persons with disabilities, including mental-health issues, get to exercise their own agency – through informed consent – over all legal, administrative, medical, and financial matters that concern them. (States, again, would retort that certain cases may be in no position to comprehend what they are being told.)
“Unfortunately, we have articles copy-pasted in most of the personal status laws and civil codes of Arab countries, saying that persons who are quote-unquote ‘insane’, ‘idiots’, ‘with dementia’, have no legal capacity,” Muhannad tells me in a dimly lit meeting room, as the September mists outside the windows wrapped high noon into premature dusk. “The funny thing is that these laws have definitions for what it means to be ‘insane’, and these definitions are, of course, derived from books that were authored maybe 1,200 or 1,300 years ago, I mean, from old Islamic books, without any scientific basis.”
A father of two with a burly build and an endearing smile that instantly rewinds his age by a decade, Muhannad may be perceived as an “overachiever” by conventional standards, having held high office in his country, contributed to well-established publications, including The New Republic and Newsweek, and is now serving as a UN expert. But none of this would shield him from the stunning sonatas of social stereotype, especially in the Arab region.
“People perceive blind persons, based on Arabic drama, as either imams or musicians playing the luth; and they have a very strong sense of smell, I mean, they can smell from far away. This is the stereotypical portrayal of blind people,” Muhannad notes, with a sprinkle of humour. “Let alone the proverbs, the discriminatory proverbs, that we have in our Arab countries about disability.”
A radical mindsetshift is still overdue, Muhannad argues, if the medical and charity-driven models of dealing with disability are to ever be replaced by a rights-first approach. “There’s still a long way to go. Laws and policies are very important, but, as I always say, even if you have a heaven of good laws, good policies, accessibility, reasonable accommodations, but you don’t have the mindset that accepts diversity, then you wouldn’t have achieved anything, anything,” he notes.
In between sentences, Muhannad lets out a subtle sigh. He doesn’t believe this quantum leap will be achieved in our lifetime, making it a strategic necessity to focus on the younger generations: “I have two children now; Maria is 16 and Amir is 13. They never ask me, ‘Are you blind?’ ‘How come you don’t see?’ or something like that. They took it naturally; they are accommodating me and I’m accommodating them, naturally. So, starting with children, and investing in children, I think, is the best way to build a diverse society.”
Estimates somewhat vary regarding the number of people living with blindness in the world today, but one figure recurs: 43 million – without counting millions more with severe visual impairment, a condition that Gertrude Oforiwa Fefoame, the Chair of the CRPD, had managed for years, throughout middle and high school, before becoming legally blind at age 17.
Confident and optimistic by nature, Gertrude handled the transition well and was already nurturing a dream of becoming herself a teacher, until the day she bumped into a trio of distant relatives on the street, and, out of that dismal exchange, she considered taking her own life.
The exact words, said some 50 years ago, are now a blur, but they cut deep enough for traces to remain indelible. “Why are you here?” asked one of the women sharply, alarmed that Gertrude was at the entrance of the Akropong School for the Blind, the first one to open in Ghana, back in 1945, at the hands of Scottish missionaries. “Oh, I have enrolled at this school,” Gertrude replied, timidly.
“Oh, my Lord!” exclaimed the elderly relative, “The end has come for you. We thought you were going to be better! Have we really lost all hope?”
In a certain sociocultural register, these could well be intended as expressions of empathy, somehow. Yet, being overpacked with moans of maudlin negativity, approaching blame, the whole interaction would send the once-joyous “Getty,” as her friends call her, into an intense, if mercifully short-lived, vortex of self-questioning and anguish.
“In that challenging moment, I wasn’t sure whether I was going to remain in school; and I wasn’t talking to people about the encounter I had, so nobody knew why the lovely, smiling Getty is moody, crying,” Gertrude recounts, dressed in a crisp Kente cloth top, a Ghanaian’s must-have, and wearing her hair in thin curls that match her peppy personality. “And I would reflect ‘Oh, should I just end my life? If life wasn’t worth living, then it might still be good if I ended my life?’”
Fortunately, Gertrude will quickly wriggle out of this patch of despair upon building a fortuitous friendship with another blind girl, about her age, who had already enrolled at the Presbyterian College of Education, a teacher-training centre in Akropong that Gertrude was hoping to join. “So, I got encouraged, and that is how everything has changed,” Gertrude recalls with a smile. “Immediately, I told myself I have a future.”
The future will, indeed, reciprocate Getty’s candid smile. Years of training and several qualifications later, including an MA in Theology and a BA in Special Education, Gertrude will climb the echelons of civil society, from local associations to umbrella organisations, eventually holding executive roles within NGOs like Sightsavers and the International Council for Education of Persons with Visual Impairment – all the way to becoming a member of the CRPD, in 2018, and then the first African woman to chair it, four year later.
Grateful for every bit of her own journey and desirous to “give back” to her community, Gertrude insists in her gender and disability advocacy on resilience and self-empowerment and is critical of the usual enemies of positive change: lack of political will, slow implementation, overestimation of the cost and underestimation of the benefit of investing in rights, among others. But she wants, here, to further stress the danger of superstitious attitudes to disability in certain African quarters and, with that, the importance of Article 8 of the CRPD, on raising awareness.
“In my country, for instance, there are still some people who think that a person will have a disability because that person had been wicked, or somebody in the person’s family had been wicked,” Gertrude notes, referring to the deplorable belief in certain groups that disability could be a form of supernatural punishment.
Not all disability-rights defenders have a disability, of course. Markus Schefer, for instance, is one of three CRPD members without a disability. A Professor of Constitutional and Administrative Law at the University of Basel, this Swiss native from the German-speaking town of Teufen, who turns 60 next year, is a dynamo within the group.
Svelte, dark-colour suit but no tie, and with that interesting mix of salt-and-pepper hair versus dark eyebrows, Markus has spearheaded the drafting of disability-rights laws in three Swiss cantons and is working with associates on more. The day we met for this interview, he was excited about a very Swiss event taking place the next day in Berne, crowning some of his activism in his homeland.
“Tomorrow, we are going to hand over to the authorities in Berne the public signatures for a popular initiative to change the Constitution in Switzerland,” he told me. “We launched an initiative to change the Constitution and include a provision into it; that is, a provision to implement the CRPD.”
Perhaps misreading my facial expression of admiration for a functional direct democracy as puzzlement, he elaborated: “So, we collected 100,000 signatures, which is not easy to do. We got these signatures, and now we’re handing them over tomorrow in Berne. We’ll have the ceremony in the Federal Square.”
Like the other experts I spoke to, Markus agrees that the CRPD has, since its entry into force in 2008, become an authoritative advocacy tool in the hands of rights defenders and has made a tangible difference in the disability world. But he believes that progress is worryingly slow on key themes.
“On the fundamental issues, like ‘legal capacity’, ‘institutionalisation’, ‘deprivation of liberty with forced medical interventions’, ‘education in segregated settings’, you don’t see a development by leaps,” Markus notes. “You see gradual changes, if you see changes. And what we are seeing now, in [certain Western] countries, is retrogression.”
I had to bracket out the country names that Markus cited to avoid any finger-pointing, but they were, indeed, among those least expected, in the collective imagination, to be dragging their feet on disability rights.
Throughout our face-to-face, I refrained from asking Markus the lazy, low-hanging question: “How come you don’t have a disability and you’re sitting on the world’s top disability-rights committee?” I deemed the question a bit unsophisticated, beside the point, nosey, and probably even offensive.
But I granted myself some journalistic licence to lightly hover over it the minute he told me that: “You can’t do law and you can’t do CRPD if you have no clue about the lived realities, which is, of course, more difficult for me because I don’t have a disability; I don’t have the experience that most of my colleagues have. And that’s why I try to bring different aspects to the table.”
It turns out that Markus has been asked that question hundreds of times, and he still takes it with a gentleman’s composure.
“This is a question that I’ve answered about probably 400 times,” Markus quips, referring to the number of UN delegates in Geneva and New York that Committee members have to chat with before their election and re-election to the CRPD. “If you are on the Sub-committee on the Prevention of Torture, nobody asks you: ‘But you’ve never been in a torture chamber?’ – Yet, here, it is a question. Why? Because we, as a society, have the idea that, ‘Well, this is a problem for persons with disabilities!’ Yet it is a human-rights issue that concerns everybody.”
In an admirable show of confidence, rectitude, and raw commitment, Markus tells me that there’s no sweet inspirational narrative or cathartic causality surrounding his disability-rights activism, where a loved one with a disability, for instance, would have compelled him into action.
“Those are the good stories; I don’t have that,” he says, with touching directness. “I had an uncle with an intellectual disability, but that fact did not play a role that I consciously could see. I can’t imagine that others played a role in this. I had, since the mid-90s, contacts with people from the umbrella organisations of persons with disabilities in Switzerland. I worked with those people, academically, and there’s no story of personal inspiration behind it.”
As our interview was winding down on a bittersweet note, Markus threw in for good measure: “This isn’t a happy ending; it is a struggle, and that’s why it’s worth doing it.”
*A shorter version of this feature appeared in UN Today’s hardcopy issue.