Never would I have imagined, especially in the prime of my life, in my most dynamic years that I would develop a physical disability and have to ask for assistance or need accommodations in the workplace, as I do today.
In 2007 I was diagnosed with Hereditary Inclusion Body Myopathy, a degenerative, muscle wasting condition affecting my entire body, which typically leads to severe incapacity within 10 – 15 years of its onset. I had shown signs of weakness since 2002, and the doctors told me to stop my international career and prepare for what was to come – a life of serious physical inability. With no approved treatment or cure and less than 1,000 known patients worldwide, it might have made sense to some to take the doctor’s advice and stay home. But at the time the disease manifested itself only as a slight limp so when I had the opportunity to work with UNICEF Angola, just a couple of months after being diagnosed, I left immediately to continue gallivanting around the world as I had been doing since I joined the UN in 2001. Never did I imagine that in just five years my condition would progress as far as it has. I now wear braces on both legs, use two canes to walk and check that box on the P-11 UN Personal History Form to indicate that I have a disability.
Almost everyone discouraged me from coming to Haiti. How will you manage in a country recovering from such an enormous natural disaster where there is not even the most basic infrastructure for Haitians with disabilities?” said so many. I heard this from those who had come here during the Emergency surge or had a media-fed vision of what it might be like here, despite the new attention on people with disabilities, specifically the 4,000 new earthquake amputees. Even when I received indication that I was the preferred candidate, I was honestly afraid to breach the subject of needing assistance. But I felt compelled to ask if there were any security issues or restrictions about having a staff member with a physical disability working in a mission like Haiti. And the answer was, I don’t know – a fair and honest reply. Immediately my future supervisor, Stephanie Kleschinitzki, approached our Representative, Francoise Gruloos-Ackermans, whose response was nothing less than brilliant, “Of course she must come to Haiti”. Within moments Francoise was on the phone with Rosangela Berman-Bieler UNICEF Senior Advisor on children with disabilities in NYHQ and then was programming Rosangela’s number to speed dial. Indiana Gonzalez, the Chief of Operations had her team scurrying around making accessibility adjustments and arrangements for my safety and comfort. In preparation for my arrival, Stephanie, sent a list of potential accommodations, as the office is still situated on the UN MINUSTAH base. This was a gesture that one should expect of an organization like UNICEF, but one for which I was just the same, sincerely grateful. Here is the list:
· Ensuring that MOVCON gets clearance for someone to greet me immediately at the embarking off the plane, so that they can help to manage clearance through customs and the pick-up and carry of baggage to the vehicle.
· Choosing a workstation in a container that does not have stairs.
· Assigning me a navette driver that has the capacity and the right caring attitude to help with the movement to and from the office.
· Making a vehicle available for me to travel to and from the Cafeteria here at Log Base on a daily basis at lunchtime (it’s a 10 minute walk in the sun).
· Ensuring that my workstation has a phone to eliminate unnecessary walks around the containers and base.
· Giving an extra level of assistance to find a hotel/apartment that is ideal for the mobility impaired (no 2-floor walk-ups etc.)
What a relief it was to know that I would be offered help without having to feel as if I was imposing on the office and my team. These simple accommodations and the kind help my colleagues show me every day let me focus on my job and perform with dignity. Their positive attitude and open engagement makes all the difference in my workday. While my soon-to-be colleagues discussed their concerns as to how I would cope, Francoise had everyone mobilized anticipating my arrival.
Getting here was not without its delays (attaining UN Medical Clearance, was the most insensitive process) and had things gone sour – as I feared they might, on more than one occasion, I was not sure how I would respond. I had in hand, as if holding on to it for protection, the statement issued on October 4, 2011 by our Executive Director, Mr. Lake, outlining UNICEF’s support for the active promotion of hiring of persons with disabilities and dedication to their accommodation in the work place. Low and behold, I joined UNICEF Haiti in November 2011.
Now I mention all of these details to you because they deserve attention. I was raised in Canada where we are taught not to take notice of a disability, as if it is not an issue. But knowing what it is like to live the first 33 years of my life with no physical limitations and then all of a sudden to have to check that box on the P-11 form, I disagree. We should take notice, at least in regards to learning about different types of disabilities. We should ask without feeling awkward, if someone needs assistance and take advantage of the fact that they can offer a unique perspective that people without disabilities, will never have. It is this personal insight that is such a valuable asset to further develop UNICEF’s rich culture of diversity and inclusion not only among its staff and partners but also for its’ most vulnerable beneficiaries, namely children with disabilities. Recently my Section Chief, Chrystian Solofo-Dimby, who I share a container with, said something that touched my heart, “Cara, not until I met you have I been so aware of the many daily complexities and issues people with disabilities face.” And he thanked me for showing him that I am equal to everyone else. This testimony only emphasizes the importance and impact of inclusion.
I still show some signs of once having had an athletic life, but the reality is that no longer can I lift heavy loads. I cannot carry a note book to a meeting or a glass of water to my desk. I cannot step up onto a curb without assistance or climb stairs and ramps unless there is something sturdy to hold on to. A gush of strong wind can easily topple me over, despite having my canes to keep balance and moving around alone in the rain is totally out of the question. Walking long distances, without having unlimited time, is simply not possible. And if the door to my office container swings open too fast, before I have a chance to stabilize my feet, I am most likely to fly with it. So how do I manage? This is where my wonderful colleagues have helped make my transition and daily function in this difficult terrain so seamless. I do not feel that having to ask for help for some of the most basic tasks is bothersome – like asking Junior or Johnny to bring me a jug of water in the mornings; or asking Dominique to let me lean on her arm to walk to the washroom when the wind outside is blowing strong; or asking Suzie to carry my papers to our section meeting; or asking Ricardo or Vladimir to help lift my dangling leg up into the tall field vehicles. These little things not only foster a sense of acceptance and understanding, they also help set the stage for the next professional with a disability, who might need some sort of assistance or accommodation.
However there is still stigma and discrimination to deal with, something I never experienced before having a disability. It is there every day, not necessarily from a desire to be cruel or exclusionary, rather arising from fear and ignorance. This motivates me to get out there so people can see a young woman with a disability engaging in society just like they do. Let people see me struggling, slowly but surely, to get up the stairs of the restaurant on the UN Log Base or have to ask for help to walk through the fancy stair-ridden Karibe Hotel. Let them stare with eyes wide open and wonder how is it that I might be at a public event on behalf of UNICEF, taking an active role in public life. Let them meet me and learn that UNICEF is an organization that not only supports its staff with disabilities but encourages them to strive and succeed. Let them realize that having a Disability Focal Point in the office, (a responsibility I am honored to have), is an opportunity to empower a staff member living with a disability and share their own life experience.
There is so much that we still need to do at UNICEF – in Headquarters, Country Offices, National Committees and in our programmes – to engage and empower women, men and children with disabilities. People with disabilities are a powerful and dynamic community, one I am so very proud to be a part of, just as proud as I am to be a part of UNICEF.