Throw Back

outcast

Recently I had the opportunity to work at a client who’s focus is the eradication of blindness. I had some misgivings going into the organization, “the blind man at the blind organization”. Initially the gig was a good fit the people were excellent the mission for the organization seemed sound and I had fun for a while.

During the engagement I became uncomfortable. I was working for a client whose sole mission was focused on the eradication of blindness they didn’t know anything about being blind. During the work engagement I learned that 80% of blindness globally is avoidable or treatable. I checked this out for myself and sure enough the main causes of blindness are cataracts, lack of clean water, and nutrition.

My client, this NGO, “non government organization”, and many others globally are funding projects to provide better nutrition or vitamin supplement shots and clean water to people in poverty to avoid blindness. They are also funding delivery parterres who perform factory style cataract surgeries to restore vision. All profoundly Nobel causes.

I’ve written about the models of disability in the past, the moral model where you or someone in your family has sinned therefore your blind. The medical model where blindness must be eradicated and you’re not normal until your fixed. In addition to the integrated model where if your blind you are integrated into society and your blindness is seen as a part of you that you manage, sometimes with assistance so you can live your life. Then you have to add in prosperity and poverty dynamics to each of these models.

When you put the equation of resources and a societies investment in a person with a disability into the mix you get a very different picture. A moral model with prosperity will likely have the disabled person supported by the family the disability and the disabled person hidden from view as not to embarrass anyone. The moral model with poverty means the person with the disability is the last one to get access to any resources the disabled person is then disenfranchised, isolated and dies.

The medical model with prosperity has the medical professionals doing everything they can to regain or grant you restoration, your fixed. Or if you can’t be restored you are supplied with technology to restore you. Problem solved once you are enabled with medical treatment or technology your fixed, suck it up buttercup. The some of us that can’t be fixed, and the poverty side of the medical model is you don’t have access to services or technology and again you are the last one to get access resources your disenfranchised, isolated and you die.

The integrated model is very straight forward and probably most follows a biological model. If you viable and you contribute your invested in directly proportional to your value to the group. In prosperity and poverty if your disabled and you’re adding value you will be invested in. But if you’re not adding value you are denied access to resources, your disenfranchised, isolated and you die.

The personal ethical and moral dilemma I was put in was what do these NGO organizations do for the ones they can’t fix. Or the ones that they try to fix and the procedure fails to fix them. The answer unfortunately is nothing. Since these people live in less developed parts of the world they are denied access to resources, disenfranchised isolated and they die. It’s an unfortunate point that the people that fall through the cracks of these NGO’s are literally sentenced in some cases to death.

I being one of the people who can’t be fixed, I’m very very likely permanently broken, would be allowed to die.

During my work engagement with this NGO I came to realize that they didn’t know what to do with me. Their mission was to eliminate people like me in my condition. I was incurable so I was a throw back so to speak. During my time on-site with this client the comments and communications were all positive and bright and friendly. Then behind my back the client would tell my boss I wasn’t delivering to their expectations.

During a customer engagement I am used to having open and frank communications with my customer. If I’m off track or have gone sideways my expectation has always been that I would be told given the opportunity to correct the situation and continue the engagement. With this client I came in delivered a draft deliverable which I was told was fine I then presented the deliverable to the leadership team. Afterwards I found out the deliverable wasn’t fine. I was crushed. I found out third or forth hand that their was an issue I wasn’t given the professional courtesy the dignity the opportunity to re craft recast or fix anything. I was undermined.

It is a hard lesson to learn that organizations that tout that they support peoples with disability don’t know anything about being disabled. Its impossible and unhealthy to work in an organization diametrically opposed to your existence. In the future I will if ever presented with the opportunity to work with an NGO be very clear on the mission of the NGO and determine if the mission aligns with my values and beliefs. I’ve come away from this experience hurt. People with disabilities stay in a job as long as they are accommodated, after this engagement I left my position and move on. What a relief.

 

About the Author:

Kyle has ocular albinism and has been legally blind since birth. Kyle leads a very active live and is besides his professional career involved in many projects for persons who are different.

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