This is the third and final part of my mini series exploring the question,“Are People with Disabilities Contributing Members of Society?”.
In this piece I want to explore Intellectual Disabilities- what about the people who don’t talk or communicate in a way I understand? What about the people that are really, really different from me – are they contributing to society? Does their life have meaning?
Some people say that people with exceptional differences from ourselves are here to help us work on some part of our own spiritual/mental development. That in some way they challenge us to be more, do more, feel more.
That answer reeks of patronizing bullshit to me. Why should anyone be alive, save for their own sake? We all have value, we all are here to experience life for ourself. I refuse to believe that anyone is here for the sake of helping someone else’s spiritual development.
I believe every person’s life is their own. They are born and are alive to fulfill their own desires, needs and wants. They are here for their own journey, their own experience. They are not here for my own – or anyone else’s – learning opportunity. If any of us learns from one another, that’s a fabulous and delightful bi-product of this, but it’s far from their reason for being alive or their purpose in life.
Others like to answer that question by challenging the value of contributing in the first place: who says we have to contribute? We don’t have to contribute to have value! Why do we have to create a value-based society at all?
But I don’t agree with that either.
It doesn’t make sense to me that some people contribute and others don’t. I believe that we can all contribute within a value-based society. Perhaps it’s the decade I have spent working as a career counselor and in the career services industry, but I cannot divorce myself of the notion that 99.5% of everyone really wants to work.
I am not talking about chomping the bit for a 9-5 under a sad-faced pimply teenaged “crew leader” but rather, we all seem to have this yearning to be valued, to give in a way that is meaningful. To grow, learn, develop our skills and apply them.
The problem I think lies more in what is available for people to contribute to, and within our narrow parameters of what “work” and “contribution” consist of.
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Have you ever watched Star Trek: The Next Generation? Well, in TNG, there is a Counselor on board who is an empath. She can sense people’s emotions and the Captain is always referring to her and seeing how something feels to her. Then, the chief engineer is blind. He “sees” by way of his visor.
Star Trek has long served as real inspiration for the tech-world – the iPad, small computers, hand-helds and flat-screen devices all came from inspiration from Star Trek, after all. I think career paths will too. I think that those types of careers – using skills that are not currently valued, coupled with technology – are what we are headed for in our real-life future.
Put simply, I believe we are headed for a redefinition of work by way of application of technology as well as a new sense of value for lines of work that may not currently exist.
Can you even imagine, for example, President Obama taking an empath with him to a summit, and getting advised on the state of everyone’s feelings?!
Jobs related to feelings right now are relegated to FruitCakeLand. We essentially have an entire field that is lying unexplored and untapped because we don’t attach monetary value or recognition to feelings… yet.
A possible feelings industry is just an example of a career field that so far has been untapped. As far as current career fields go, sure people with intellectual disabilities can and do contribute to pretty much every career field, from teachers to baggers and back again. But by and large, it seems to me that people with intellectual disabilities are shoved into boxes, and society tries to make them like people without intellectual disabilities. People with intellectual disabilities are being assessed and judged by a criteria that does not make much sense given what we do know about intellectual disabilities.
We assess people with/without intellectual disabilities according to our current value system. Our ability to sort, add, subtract, “critically think”. We don’t assess on kindness, compassion, empathy, courage. We can continue doing what we are doing, yes, but I believe that’s missing the point, the point being that while people with intellectual disabilities can follow along the lines of what people without intellectual disabilities do, they have skills that they can lead in that are currently untapped.
I believe people with intellectual disabilities are leaders in their own right.
But I don’t think we know all that much about intellectual disabilities, point blank, and I think we are missing the mark with how we currently assess and judge the capacity and skill sets of those with intellectual disability.
It’s like we are assessing an African Masaai warrior for his skill in navigating Finnish tundra. Or to use another analogy, it’s like we are still sitting around here in our caves with our stone axes and grinders and we’re saying to someone who can’t lift a stone ax that he’s useless because he can’t lift a stone ax. Fast forward 200 years and you’ve got a stylus and an ipad…and how useful exactly is the skill of lifting a stone ax?!
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I think people with intellectual disabilities should contribute to society because I think that as integral members of society, they have the right and responsibility – not to mention usually the desire – to. But in all honesty, I don’t think the jobs that they will lead the way in have been developed yet, nor do we really know enough about the unique talents and skillsets that people with intellectual disabilities possess.
I know my answer is not satisfying. But that’s often the way it is when you are embarking upon a road that has not been well-traveled. It’s not satisfying because you don’t have clear maps, you don’t know the route and you don’t know exactly where you will end up.
But I believe that with courage, confidence, sensitivity, open ended education and by striving to empower people with intellectual disabilities, we will be opening the door to not only a whole new world for them but for a whole new world for all of us.
Just as a bird cannot fly with only part of it’s body, the human family will only be able to soar when all members are included and contributing.
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Meriah Nichols is a counselor. Solo mom to 3 (one with Down syndrome, one on the spectrum). Deaf, and neurodiverse herself, she’s a gardening nerd who loves cats, Star Trek, and takes her coffee hot and black.
This has been an interesting discussion on this topic. And I appreciate your thoughtfulness in asking the “tough” questions. In my opinion, how we humans value other humans ultimately has no value. Each of us are valued equally, in our own uniqueness, in the eyes of God. It is His worth and His purpose for us that is the most important. Measuring worth or societal contribution will always lead to failure among one person or group. Does God value Oprah more than me? Or a brain surgeon more than the person with a severe intellectual disability? Hardly not, from my perspective. I know that there is a place for proving some kind of worth or purpose within society for reasons of ethical and moral dignities. But trying to discern a value quotient for others will always amount to failure. It’s a disservice. Great thought provoking questions and awareness campaigning here, Meriah!
“The root is, every person’s life is their own. They are born and are alive to fulfill their own desires, needs and wants. They are here for their own journey, their own experience. They are not here for my own – or anyone elses – learning opportunity. If any of us learns from one another, that’s a fabulous and delightful bi-product of this, but it’s far from their reason for being alive or their purpose in life.” This is SOOOO good !!! I love you!
Great series Meriah!
Greetings!
So much here to talk about! It would be so wonderful to have a cup of coffee with you.
The older I get the less I know what a disability is. Is it something within or part of an individual that does not meet or exceed an established and standardized benchmark of skill proficiency? Does it only apply to people that are under this average and not those that vastly exceed it? Is one that is intellectually gifted considered disabled because he is as far from the average proficiency one that is intellectually challenged? (I am sure you have covered this in a prior post and I will read it, but what makes a disability?)
As for jobs involving feeling being a part of FruitCakeLand… yes and no. In some sectors these specialists are used to estimate and evaluate the emotions of boards, agencies, juries or other situations where the human element heavily influences an outcome. Knowing how certain information makes a decision make feel let’s the proponent know how to change strategy to maximize the chances of his/her client getting the goal.
As for it being a mainstream job.. I think it is still a bit too specialized a skill to be implemented at the basic level. Not FruitCakeLand, but the people with these skills are not frequently in common sight either.
In my area (environmental), what often considered a disability (deafness) is actually unbelievable gift to the employer.
Remember how, in a previous post, you mentioned that because of the deafness, the expressions of people were not like they were to hearing people? Bingo! Now take that level of hawkeye observation/interpretation skills and come out to a field site and tell me what is there. One of the hardest things is to teach students how to “see” in the woods (because it is different than normal “seeing”. With what I have learned in your blog posts, many deaf people have that “vision” as an integral part of their lives.
Take that ability to “emotionally read” people and give it to a person that can present multi-million dollar project proposals to an emotionally charged board for approval.
It’s not a disability, it’s now a super-ability.
No, not enough jobs have been developed yet, most likely because for many employers, the word disability is a word fraught with risk (imagined or not). Getting to see how a disability has created a specialist with a super-ability is long overdue in the workforce.
Your posts make me think.
Thank you.
I get a lot of this at work, the vocational perspective. I have to say I am really big on survival as a basic value and meaningful activity – employment. Not so much. Not in itself. For me it is about finding your place, your niche where you can lend your best level of skills to a task/experience….
What are our underlying values/ cultural overlays and how much of that informs how we see ourselves in comparisons?
so enjoying the series!
as i read this i agreed that each individual is on their own journey and we have a tendency to not be able to see this clearly w people w disabilities who aren’t on conventional paths.
but what really hit me was that when you wrote they are not here for anyone else’s purpose my response was: but they ARE, BECAUSE WE ALL ARE. We are all interconnected and we all need each other regardless of our abilities, and our needs aren’t static but continually change over a lifetime. and it really is our fragility (and the fact that we’re needy and mortal) that allows us to empathize and want to care for each other.
this culture promotes the fallacy that we are independent agents and we all pretend along, trying to keep up the illusion
with people w significant disability we can’t ‘pretend’ anymore —
ben is now screaming at me to get off, so more later
thanks so much xo
on that level, Louise, I could not agree with you more!
“So, what I am saying is that I don’t think we know yet how people with intellectual disabilities can or should fully contribute. We keep shoving them into boxes and judging their skillsets based on criteria that doesn’t make much holistic sense. It’s like we are assessing an African Masaai warrior for his skill in navigating Finnish tundra.”
This is what I was trying to say when you wrote your first post. When I question the terms “usefulness” and “valuation” what I am doing is not so much looking for easy answers but rater suggesting those terms are culturally loaded terms. When I resist the valuation of humans what I am doing is suggesting that what we value right now in humans, the ways that we rate usefulness are problematic.
And while I like the idea that we are alive for our reasons, etc, we are in some ways here for each other as well. Perhaps I am splitting hairs here but my journey is also the journey of my family, my friends, my world. Not in some cheesy new age way either but in the hard suffering ways as well. Jude’s journey is not fully her own but neither is mine. I think what I chafe against, and what I hear you chafing, against is this idea that people with disabilities are denied the kind of individuality that people without disabilities (I HATE this language and I’m learning so forgive me). On the other hand, I would argue that many of us with or without disabilities are limited in self-determination so more than others.
Hi, I loved the series, up until the end one. I was perplexed by the title referring to people with profound intellectual disabilities but then the discussion was about all people with intellectual disabilities. The community of people with intellectual disabilities, like all communities, has within it, a wide range of talents, skills and abilities. There are poets like Gretchen Jospehson, painters like Raymond Hu, composers like Hikari Oe … I have a long list of people with intellectual disabilities who have made enormous contributions … people I admire like Sandra Jensen whose advocacy change laws and people like Martin Fudge whose quiet grace in the face of discrimination moved me. So clearly talent and passion are not gifted on a selective basis. For those with much more profound disabilities we have, where I work, developed a means of teaching self advocacy – voice and choice – to those with even the most significant disabilities and we’ve seen people grow and develop into people who can contribute to THEIR world, and that’s enough I think. Not all of us make contributions to the WORLD and most of us are content not to. That we effect our world and the people in our world is enough. My grandmother lived a small life, changed no laws, invented no cures, lead no country, composed no symphony – yet her life was big enough to make a difference in my life and the lives of all she loved and who loved her. To others she may have seemed unremarkable, to me, to my heart, she was the biggest influence I had as a child. She, in her soft voice, still guides me in making some of the hard decisions I have to make. Contribution is a tricky thing to measure. Back to those with intellectual disabilities, each person is different, each has their own path and each has their own contribution to be discovered, some will write music and some will inspire music.
Dave,
I could not agree with you more. I think these types of conversations are difficult to have in written form because every*single*thing needs to be clearly and carefully detailed to prevent miscommunication. I’m definitely still learning how to do that.
I was talking about people with profound ID; more along the lines of those people that will never speak or walk, etc. That communicate through their eyes. I wasn’t talking about those that will communicate along more typical ways (for something like that, I wrote a post called “What Do People with Down syndrome Bring to the World?” ). I feel like too often we focus on those with ID who are more like us, PWD who have no noticeable cognitive difference, you know?
I feel that for people with profound ID, it becomes this question on the part of society as to the value of this person’s life, their worth, if they require care from others for mere survival, if they will never eat, drink, talk, walk, etc on their own. I feel like people will evade the answer to that by flipping it around through questioning the point of contributing to society at all: what is contribution, etc.
I don’t know if I’m making sense in this.
My opinion is that contribution to society is vital to all people; but that “contribution” can take many forms (which is I think the same thing that you were saying). The point I was really trying to make in that last post is that it’s my honest belief that there is something very great that we have yet to tap into with people with profound ID. We are not there yet, as a society, either by what we have developed, technologically speaking, or where we are in terms of our emotional development. But that aside, I completely agree with you about the different types of contribution and so forth.
Thanks for reading! Wow. I feel really honoured.
Meriah, thanks for the response, I do agree that it’s tough to have ‘comment conversations’ but the upside is that they are recorded and a variety of other people can eavesdrop. I found it hard too, to discuss this because I’d love to show you the work that we are doing with people who have significant and profound intellectual disabilities. It’s stunning to ‘call people’ out of where ever they went, deep inside, after years and years of neglect and disregard. Its astonishing and moving to see. I think everyone likes to be able to give – but in order to give, they have to be seen and acknowledged. I sometimes think that for the first few years of life people with significant disabilities hold out their gifts in hopes that someone will take them, but after the offering is rejected once too often, many begin a journey in. Now its for us to knock and knock and knock again – and when the door is answered, its life changing.