Good day, fellow CYC/CYWs.
I have become interested in how our discipline views and responds to disability (think more than just physical) in children/youth/adults. What are your thoughts on this topic?
If you respond to this thread, could you mention your country (there might be some variations in views depending on the country we practice in). I am interested in the general view and responses that are taught, practiced and accepted in the field. If your views are different from the general view, could you please indicate it as well?
P.S. Any references to some great articles about Child and Youth Care and its view on disability would be greatly appreciated !
Thank you all in advance!
I wrote this chapter some years ago. It looks at the UK context.
Millar, J. Disability: A Question of Perception in Bolger, J & Hothersall, S (eds). (2010) Social Policy for Social Work and the Caring Professions. Farnham: Ashgate Publishing
That is a really awesome question. As a (mutliply) disabled Child and Youth Care myself it's a question that I've tried to take up in my study of Child and Youth Care and in my practice.
From what I've been able to tell Child and Youth Care doesn't have a set perspective on disability. It's certainly not talked about to nearly the extent that we talk about other core parts of Child and Youth Care such as relationship, use of self, use of daily life events etc. In fact, much of the Child and Youth Care literature on disability is related to specific interventions with specific disabilities rather than an overall framework or perspective on disability.
One of the things that Child and Youth Care (In my opinion) isn't so great about is incorporating the social model of disability into our work. Often we look at behaviours or things that are associated with a disability and draft up intervention plans for how to work with children and young people to bring them to a place where they can 'pass' as non-disabled, rather than from a place where we accept disability as naturally occurring variations of the human experience where accommodation is what we should be looking for. So, for example, when we intervene with a student with ADHD our work with that student often revolves around reducing problematic behaviour, increasing compliance with a behavioural program, helping them achieve success in the classroom or at home, as opposed to working from a social model of disability framework where we might examine how the class is being taught and work on creating a classroom schedule that is more effective for students with ADHD, providing a student with more opportunities to pick topics that they are interested in for school assignments so that they can capitalize on their hyper-focus etc. instead of asking the student to conform to what we might expect from neuro-typical students, we change the classroom to optimize the student's strengths and allow them to learn in the way that makes the most sense for them. Though at different places in Child and Youth Care theory we might advocate for either approach depending on whether one is working from a behavioural or ecological model, we don't really take a stand around disability that says that our emphasis should always be around reducing the barriers in an environment, rather than viewing what is going on as an individual impairment that the child is responsible for figuring out how to manage.
It gets more tricky still when we look at disabilities where there is a cultural implication for that particular disability, such as deafness. Then the practitioner is not only working with an individual with a disability, but also cross-cultural, possibly at the intersection of many cultures for that particular disability. It can become even more difficult to differentiate between what are cultural differences, and what are disability-related issues (Such as for example, many deaf children don't have access to communication within their families as their families don't know how to communicate fluently in sign language). It can become really difficult to create an assessment or recognize how interventions might need to be adapted to meet the needs of those particular clients, especially if there are language and communication difficulties between the Child and Youth Care and the client, or if it is an unfamiliar area for the CYC. There is very scarce literature on working with deaf and hard of hearing young people written at all, and even less from a Child and Youth Care perspective.
It's really complicated. As CYCs we want to say of course we accommodate disability, and we work towards inclusion of those with disabilities, but I think we do have to take a really hard look at what standards we expect those with disabilities to conform to. I think often we see diagnoses such as developmental disabilities, ADHD, ASD, and we automatically go into behavioural interventions, and we don't stop to think about the disability related implications of only viewing those disabilities in terms of behaviours that need to be managed, or hitting developmental milestones. Of course there are always issues around safety that need to be attended to, but how can we modify our work to work from a place of trying to create the most adaptive, accessible environments for our clients first and foremost and then follow the leads of the young person for how much they'd like their own behaviour to adapt to able-bodied norms. In fact, there is a burgeoning group of autistic young people who have become increasingly vocal that behavioural based interventions when they are unwanted is incredibly harmful and damaging to them, and that they would like more autonomy to dictate the terms of the assistance and support that they receive (Such as the Austisic Self-Advocacy Network http://autisticadvocacy.org ).
Anyway, that is how I as a disabled Child and Youth Care from Canada see things. I’m not quite sure how those who are non-disabled or from other places understand it.
Once again, thank you for your response! I was wondering if I could get your permission to forward your response to one of my former professors at Ryerson university? In my last professional issues class we raised a question about why Child and Youth Care does not specifically talk about disability and how we address it as a profession. It became a great focus of our discussion, largely because we had a disabled student in our midst, who brought the issue to our attention. Since then I have not been able to rest my thoughts about the place of disability in Child and Youth Care field. One of the arguments against teaching students about specific disability issues as a mandatory requirement is that it becomes too specific of a focus, that the program cannot possibly cover the whole spectrum of services Child and Youth Care provide in the field. The responsibility is passed on to the employer to provide more specific targeted training.
I would like to send your response to Ryerson
university along with my letter, advocating for greater focus on
disability issues in our field of study.
Please, let me know what you think about it. If you would like, I can cc you when I send the letter.
Thank you in advance.
"Normalization" by Wolf Wolfenburger has continuing insights to inform our personal philosophy and practice. We work to help our clients adapt to society, while we just as vigorously work to help society become more accepting.
We must do both!
Our course does mention disabilities. They must have an isibindi model creating a circle of caring.
See more about the isibindi model here:
I replied to Anna privately, but wanted to share some of what I said in my email because I do think that this is a conversation that is worth continuing both privately and over a larger audience.
In my opinion, the stated concerns about disability being too large of a spectrum for Child and Youth Care to cover in training is a cop-out though. It's like saying that we shouldn't teach cultural competence to Child and Youth Care students because there are too many cultures for them to know everything about so we'll just let the employer teach them everything that they might need to know about self and self-in-relationship and how to be monitoring cross-cultural relationships because we just don't have the time to teach them all the specifics of individual cultures. You don't need to know everything about autism unless you are working with autistic folks, but what you do need is a good critical basis to be able to think critically as we approach the commonly held beliefs about disabled clients in the field. We spend a great deal of time teaching students how to think critically about what 'bad' young people are, whether they are 'bad' – or traumatized. We teach critical thinking skills about a number of commonly held misconceptions about young people and the way that they are constructed when they need support. We learn how to see strengths and resilience in behaviours that many find unpalatable. If we are able to teach students how to be critical about these things with relative ease, it is't difficult to imagine that we'd be able to teach CYCs to look at disability and the way that we have constructed disabled clients critically too. Teaching the social model of disability and disability rights is a broad-based theory that we can cover in a few classes. It would fit in wonderfully in much of the Child and Youth Care curriculum. I think in seeing disability as a set of individual conditions that need to be taught separately to students, rather than as a phenomenon that is united by many critical theories regardless of the individual conditions that disabled people experience Child and Youth Care affirms the mainstream view of disability, rather than engaging with critical disability theory and the social model of disability. I'd love to see Child and Youth Care and critical disability studies engage more with each other as I think that there is a lot of space for good to come out of that engagement.
My conceptualization of disability has evolved over
the last few years through working alongside and meeting people living
with disability. In fact, about a year ago, Shay taught me a valuable
lesson in which she took me to school (and task) over Twitter. I'm going
to share that lesson here, because I think it's important.
In the social services fields, we are commonly instructed to use first-person language as it "reduces stigma and puts the person first, separating them from their disability".
A noble idea? Perhaps. But in many cases, disability is something that the person will live with their entire lives. By implying that we can just separate the individual from their disability, we are actually negating their own unique lived experience as a disabled person.. And this can have quite significant long-term term effects.. I recently sat down with a kid and we talked and reflected on about a time when at 5 years old, he overheard one of his parents say "I wish my child didn't have (insert disability here)". That poor has kid spent the last nine years of his life riddled with anxiety and unhappiness, trying to prove that he was "normal"; but perhaps more sadly, feeling as if he was broken, damaged and unworthy of love and affection from his parents, his family members.. even his teachers and peers at school.
When deciding whether to use first-person language or how to address a disabled person or their disability.. Why don't we (as non-disabled persons) stop trying to be so politically correct and just simply ask? As CYCP's we surely all believe in the right to self-determination; I mean it's written right into the UNCRC? Why is it so difficult to afford this group of people the same rights, as it comes to self-determination?
and as a sidebar to Charles' point..
Charles, I don't want to come off as overly critical, but I just want to add that in my experience, the word "Normalization" is in many ways a very loaded word, and it can wield a very significant imbalance of power.
Speaking to my earlier point about self-determination, perhaps we shouldn't always try to rush in and normalize the disabled persons experience. Perhaps they enjoy being different? It is completely out of the realm of possibility that they are content living life in this way? I have come to believe that by constantly trying to "normalize" the lives of disabled people, we are sending the message that their lives aren't worthwhile (in the way they are currently living them). It emphasizes that they are inherently bad or defective and in need of treatment, or fixing..
These are the medical model worldviews that I believe we need to distance ourselves from as CYCP's. We need to learn to embrace people who live with disability for who they are, to accept and appreciate the diversity they bring to our lives; Simply let ourselves be enlightened by their knowledge, wisdom and their lived experiences as disabled people.
Thanks for allowing me to add in my two cents..
It's good to see this topic raised publicly. Don't let it drop!
There are long-time principles/practices from the areas of therapeutic recreation and disability studies that we have not fully realized in CYC, e.g., universal design, integration, inclusion, adaptation. Therapeutic recreation was on top of these 25-30 years ago, at least in the U.S. and the eastern part of Canada. We talk about them a lot, but we don't use that history or those practices with the depth of their commitment or their skill.
The question of whether these are too specific does not need to arise, because they should be core principles of our education.
The issue with normalization is that any theory of normalization starts from a place that disabled people aren't normal. Disability theory very strongly believes that disability is a fully normal variation of the human experience, that often brings to light the taken-for-granted assumptions of our society. Attempting to make a disabled person do things or respond in a normalized way is often a recipe for a lot of frustration and disaster on all parts.
As I was learning sign language many years ago, before I lost my hearing, I had a number of Deaf teachers who were all around their mid-thirties who would often tell us about their experiences growing up Deaf. While they grew up just after the period where Deaf children were not permitted to sign at all and were punished for communicating in sign if they got caught, the principal goal of Deaf education at the time was still quite decidedly focused on normalization. Each one of my teachers had a story of how they spent countless frustrating hours with a speech therapist learning how to lip-read and listen, and how futile putting all that time into it was. Each of them lamented how much of their education they missed at a young age to this training. Now they all use sign all the time in all aspects of their life and live successful lives. I've heard young people with autism raise quite similar concerns about ABA too, as well as many many stories about those with physical disabilities undergoing many unnecessary medical tests and procedures in the name of normalization.
With disabled children we have to be mindful of a lot of things before we make the decision to embark on teaching normalization skills. We need to be aware of what we are taking the child away from in order to teach them these skills, and how we are going to give the child those opportunities back. The loss of unstructured play time is still a loss, as that is such an important time for learning. We need to assess how likely it is that a child is going to be successful at the skills we are attempting to teach them. Teaching Deaf kids to listen and speak, or children who are wheelchair users to walk, and things of a similar vein are not useful uses of our time or theirs. When it comes to reducing what we perceive as problematic behaviours, we need to consider the protective value that those behaviours have for that child and find ways of meeting those needs in other ways before asking for the problematic behaviours to reduce. Recognizing that some behaviours are simply not going to be changeable, and that is okay too. You aren’t going to stop a child who needs to stim from stimming, but you might be able to work together to find something that is still satisfying to that child that isn't as disruptive to those around them. We need to assess if this is a behaviour that needs to change on the part of the individual or (as it is in most cases) if it would be better for the environment to adapt to the needs of that young person. And, much like Catlin stated in his email, we need to be very mindful that any attempt to normalize children be done in a manner that is fully affirming of their identity, and affirms that being disabled is a very normal human experience.
The thing is, at the end of the day, what disabled people consider normal might be different from what you consider normal, but that doesn't make it less normal or inherently bad, it just makes it different. Being disabled means that you are constantly navigating a tightrope between able-bodied people's expectations for you, and having your own needs met. It's a really stressful position to occupy. When I walk into places where I know that my accommodation needs are going to be met I feel happy and safe, but when I walk into places where I know it is going to be a fight to get what I need I'm anxious, I feel guilty, I'm stressed out, and I've lost a lot of my ability to function before I even walk in the door because I'm anticipating what is about to happen and stressing about how I can possibly get someone to listen to me and recognize my needs. Disabled people are constantly on the receiving end of interventions attempting to normalize them, from peer pressure from their friends, their families, teachers or professors, medical professionals, social service providers etc. It's exhausting to have nearly everyone you come into contact with try to change you. To have them behave as though they understand the experience of being in your body and your mind better than they do. It makes you question yourself and the legitimacy of what you need, sometimes in ways that can be permanently harmful.
I guess my take home message echoes Catlin's email pretty closely. Respect what a disabled person tells you about their body and their identity and their needs. Proceed with any kind of intervention around those things with extreme caution, and be constantly asking yourself if it is really the child that needs to change, or would an environmental intervention be just as effective. Avoid asking disabled people to change unless it is absolutely necessary. Be a safe person for disabled young people to talk about the meaning that disability has had in their lives and allow them to be the driving force behind any disability related interventions. Framing disability as normal and okay can go a long way to helping disabled people gain self-esteem. Recognize that much like the young person Catlin spoke of, many of us with disabilities carry around shame, guilt, and anxiety around our disabilities constantly. Many people with disabilities are excellent advocates for themselves and their needs, we just need people to listen to us and believe us.
I have included a recent publication that you may find interesting that challenges assumptions and notions of disability in the global south. Through my personal Child and Youth Care experiences in Brazil, myself and the authors challenge and attempt to redefine disability discourses as they relate to those in poverty. Instead, we offer are more critical approach that demonstrates a revolutionary power for those living in poverty who are seen as inherently "disabled" within the global south.
Do Nascimento, A., Skott-Myhre, H.A., & Skott-Myhre, K. S. G. (2015). Revolutionary entanglements: Transversal mappings of disability in the favela. Disability and the Global South, 2(2), 620-631
Ashley Do Nascimento
Commenting on Charles and Catlin's talk about the word 'normalization', I sometimes use the word 'average' instead of 'normal' as it is another was of referring to a majority. Even the word 'special' can have negative connotations. I am favouring the word 'unique' at the moment.
At least for me, Wolfensberger's greatest wisdom has been in the analysis of groups of individuals. He spent his career concerned with individuals with Developmental Disabilities, and was enormously successful teaching society the cruelty of the warehousing our fellow citizens in large institutions. His insights, however, extend to all groups who have been devalued by the mainstream culture – from prisoners, to juvenile delinquents, to the elderly, to ethnic minorities, etc. His contributions are monumental, but are still often subject to criticism by well-intended individuals who over react to some of his language without a though understanding of some difficult concepts.
I once saw him share a very large personal collection of slides of what I will call, 'society's unconscious discrimination'. In slide after slide, we saw institutions for the developmentally disabled surrounded by walls, seemingly to protect the public from the dangerous residents, photos of institutions next to the zoo, nursing homes built next door to the cemetery (perhaps to save transportation cost?), vans and busses with giant 'caution handicapped' signage, and on and on. Integration, not segregation, has been his mission.
For some genuine insights into your own program, look at his very thorough assessment tool, Passing Ratings Manual. See how your facility stacks up.
It is interesting how conversations about disability tend to gravitate to the discussion of the term "normal", "normalization", and language in general.
The term 'normal' made its way into realities of our society and established its influence only in the late nineteenth and early twentieth century, replacing the term 'natural'. The term 'normal' has become a very important part of our lives, as it is now widely used in various areas of our modern society (think of censuses, categorizing, measuring, statistics). The term itself came with the rise of social sciences and statistics.
However, both terms, natural and normal, are means in establishing hierarchical societies, with a possibility of denying certain rights to various groups. Historical meaning of normal is connected to the notions of progress, evolution, and eugenic practices. You can read more about it in Disability and the Justification of Inequality in American History by Douglas C. Baynton.
We can think of human lives and their worthiness to be represented on a spectrum, where anything from normal and further to the right (all the way to exceptional, extraordinary) is desirable, and everything to the left (abnormal, monstrous, and so on) is something to be avoided and changed.
Check out the work of Jean Vanier and the
establishment of L'Arche as an example of how to create an inclusive
community. Also if you look at the works promoted by Inclusion Press
they address the labelling inherent in trying to "norm" alize through
This could be expanded to then look at the work of Foucault who offers one of the more trenchant critiques of how societies aims to categorize and institutionalize those who are different.....through prisons and "mental" facilities.
Working alongside young people with disabilities –
both visible and invisible – is certainly within the scope of child and
youth care practice.
People affected by disability often bring an understanding and experience of life that contributes to all of us understanding ourselves and humanity in deeper ways.
We cannot let disability – or any other marginalizing factor – limit the strengths and gifts that people bring into the world.
Perhaps some of our greatest hurdles are overcoming the fear of how to discuss disability, strengthening our person-first language, and providing inclusive and normalizing experiences – as we would for any young person.
Too true! I completely agree with you James. Thanks for your words. I learn so much about myself, the human experience and our world through my practice with children and youth with disabilities. It's very rich work.
Thank you, Rick, for these resources! I am one of your former students :) so I am glad to 'meet' you again on an international forum :)
What I am really interested in is more specific than those resources though. I want to know how Child and Youth Care views disability, what is our perspective on it, how we, as a profession, respond to it. Do we see it as an individual 'problem', limitation, or as as a problem/limitation within our society/ environment? Or is it both? do we aim to change an individual or the environment? I see both sides in our professional approaches (ecological perspective being the one that gives the foundation to the ideas of disability being situated within the environment). However, I can also see that treatment approaches are often directed almost exclusively at changing the child/youth, designed to help him/her adapt to the environment, instead of critically assessing what can be done within the environment to accommodate a child with disabilities (not just physical).
I'm going to throw out a question here. Is it that
necessary to focus on disability when CYC work involves
practicing, with all, the guiding principles of empowerment and
self-determination? (Actually, that would be an interesting thread to
explore. Just what do we mean by empowerment and how is it taught in
pre-service CYC training?) From a language and attitudinal point
of view, I do believe that Child and Youth Care workers need to know the distinctions
between "impairment, handicap, and disability". I also think that
you are onto something when suggesting that how we look at disability
may influence what models of change we employ. Actually, I also believe
that all Child and Youth Care work demands a constant awareness of those particular
models of change we utilize, either intentionally or
unintentionally. But... if it's true that we dedicate ourselves to
practice empowerment and self-determination in Child and Youth Care work, then how will
our ruminating over disability help us in this endeavor?. Maybe it
does. Let me know.
Hi Anna and all,
I support children and young adults with various "disability" labels. I've yet to read the whole thread, but it sounds like many people practice is similar ways as I do. Here is quite a lengthy response to your questions:
First, I want to acknowledge that I an able-bodied support worker and experience varying levels of mental wellness from day to day. I think my mental health is sometimes normal, and sometimes really hard.
Second, I use the word "disability" as an umbrella term for anyone who experiences long-term illness, including those with mental health labels, people who experience limitations in their physical abilities, and people who learn and think in ways that the mainstream world does not include, recognize or validate. Yet.
Third, I see disability as interconnected with the person's social location (race, class, gender), as well as something that is sometimes re-created/constructed through labeling systems. Our world is structured, from education and employment to family life, for the able bodied, and subsequently maintains the exclusion of people with "different" bodies and minds from the mainstream. Through neoliberalism and capitalism, disability is an expanding label, with less and less people being able to survive and thrive in the center of "activity" (See Dan Goodley, Dis/Ability Studies, 2014).
In practice, I critically think and attend to the language I use and I strive for transparency in all practice situations. Labels come with power and I use them strategically for funding. Labels come with the power to oppress, but ignoring those labels does not dismantle the many systems that maintain the exclusion of "difference". Systems of oppression that maintain deep-seated and institutional ideas that people with intellectual disabilities are a danger to themselves and others and must be kept outside the center, requires challenging through practice and activism. We need to challenge the ignorant and damaging ideas that say that people who have experiences outside the "norm" are a drain on society. We need to participate in making disability visible through community inclusion and by listening to, and working in solidarity with, those who live with disabilities. This is a social justice issue, as much as it has real medical implications that create very real limitations.
For the people I support, I resist a lack-based model and try and support people from their strengths. Changing the language I use in my day-to-day world helps with this. Changing my language helps to re-train my brain and unlearn the assumptions I was raised with. For example, when finding work for people, I use their personal attributes and qualities to help them find employment. I begin with their possibilities and potential.
I believe in dignity of risk and choice and I believe that all programming can and should be designed by the people accessing the programming and services. We at my place of employment do this. I also believe in peer support. I believe that more people with disabilities need to be hired to support people with disabilities.
I support a person's right for self-determination and right to come out with their "medical label", whether it's mental health or an invisible disability, or an intellectual limitation. And they have the right to say that the DSM got it all wrong and refuse medical options, such as drugs, treatment therapies etc, and seek alternative services that meet their needs.
In my practice, I foster an environment that is non-judgmental and open to difference, both with my colleagues and the people served. We've all got places in our souls and minds that we struggle with...
I believe that the personal is political and that it's our responsibility as a community of people to support our fellow community members.
I am taught by the people I serve from the front lines every day. They teach me what they need and how I can best serve them... my values and ethics, which are informed by feminism and social justice, guide my approach to practice. I see the people I serve as experts on their life and experiences and they can tell me a whole lot more about their world than the medical definition of their label.
I hope this helps somewhat... and thanks for all the comments in this thread... it's great to see a global community and a diverse perspective on the field!
Thank you for raising the topic, making us to pause
and check who we are leaving behind like Don Matera would put it.
I am a South African working as an Advocacy Coordinator for SOS Children's Villages. I have realised that we tend to be such a judgemental society that is not accommodative of people with disabilities – both mental, physical and otherwise. Actually they are almost forgotten in our activities that include seminars, conferences and meetings as well as in our churches, where we may be comfortable talking about them without allowing them to be present and represent themselves. I have seen RSVP forms that will ask about special diet without mention of other special requirements or arrangements for differently abled people. If we ask about them we will make them feel welcome to attend the meetings.
We should also be careful about treating the differently by assuming that they cannot perform as well as other so-called abled people would and thus not giving them challenging assignments and opportunities for growth. Meaning that accepting them should also not mean accepting that they cannot perform duties but that they can achieve though it will be through different functioning.
I agree Shay! In the Child and Youth Care Program at Ryerson University, an intro to Disability Studies is offered as an elective. It could very well be a core course. It was one of the most valuable classes I took and shapes how I work with my students every day. Please take a look below at my response to your earlier thread with Anna :)
Hello Anna and Shay,
I realize I am joining this discussion late but better late than never! I am very interested in your question and your detailed response Shay. I work with students diagnosed with autism in the Toronto District School Board and my team at the school tries very hard to incorporate a social model of disability vs. the medical model. We talk openly with our students about their thoughts on their diagnosis and we do a whole unit on 'Getting to know your IEP (Individualized Education Plan). We also discuss the concept of 'Neurodiversity' and talk with students about viewing disability as a strength, not a personal fault. We try our best to take the shame out of disability and we discuss society's view as a whole.
I hope to open conversation further about disability and the social model. When I was at Ryerson, I took an elective in Disability Studies and I think that it should be a core course in the Child and Youth Care program. Shay is right, it is not talked about in our field enough and I feel it can be very easily incorporated into the Child and Youth Care perspective.
I am hoping to present further on this topic at the Child and Youth Care World conference next summer and I will likely be co-authoring a paper on this next year after the conference so keep an eye out for it :)
During this school year I will be collecting data in my classroom on self-esteem development in relation to the Child and Youth Care approach and a social model of disability. I hope to use this data in our presentation at the conference.
If you find any articles or other material that touches on the view of disability and its role in the Child and Youth Care perspective please pass it on.
I am very pleased you raised this question Anna and I look forward to reading more replies!
Very well said Catlin! I am interested in Wolfensberger's work and will read more this year. I wonder if he were alive today and continuing his work he would not abandon the word 'normalize'? It seems his work, from the little I have read, aims to promote inclusion and acceptance of disability. I wonder, as you said, his ideas simply need to be expanded to include the idea of disability as an essential and wonderful part of human diversity. I am not sure because I have not read enough but I do believe this is where CYCP's can come in :)
I look forward to this challenge of developing the ideas of the social model of disability and Child and Youth Care practice and I look forward to working with you this year Catlin. Let's keep the conversation going and please do send forward any articles and references to this topic,
I would like to join in by expanding on what Catlin voiced earlier on in this discussion.
I truly believe that the more we try to 'normalize' people, the more damage we do. 'Normal' is a very, narrow minded and exclusionary concept. Is 'normal' really what we want our sons and daughters to strive for? To be, think, act and learn like everyone else? To fall into the category and become just another person, student, employee or number?
Society is what's wrong with society. This is heartbreakingly apparent as in 2015, here the 'advanced' species continues to question how to treat, speak to, accommodate and include those who don't fall into 'normal'.
It's disheartening, that today's rules say that people must fall into categories and be labelled in order to receive the support that they need as individuals. Parents are all for it, because if their children don't measure up in the diagnostics section, they are left without much needed supports and interventions. Individuals are all for it, because without their labels, they are left on less than able to survive incomes in a world that is shockingly not accessible to and for them.
If only we could support them without placing them in categories that were considered to be outside the “norm”.
I spoke with my father in law, who was paralyzed in an accident years ago what he felt about being considered a 'vulnerable person'. He said that he knows he falls into the category but his mind, heart and soul scream 'I am not vulnerable'. It is his will and the acceptance of his friends and family, of who he is and what has happened, that has allowed him to continue on as always...in most ways.
I believe that we must begin to look at diversity and individuality as empowering, productive and progressive. Do away with “normal”.
I am very certain that there are much fewer 'normal' people than not....what strides we'd take in empowering the masses.
In response to these further discussions, here's just one further thought on the 'normalisation' word, which I agree still feels problematic.
A friend who wrote widely in this field, and who had worked with Wolfensberger, would say that, rather than thinking about people being 'normalised', we should think instead of the parallel with the 'normalisation of relations' between nations, for instance after periods of conflict or political tension and misunderstanding.
So the emphasis here would be on achieving such 'norms' as mutual respect and understanding between groups – e.g. between those with more perceived 'disabilities' and those with less – and after all which of us has the full complement of 'abilities' anyway?
I don't know if this helps, but it did help me to see it differently. On the other hand, if a word causes so much difficulty and confusion, then it's probably time to move on!
P.S. I do recall that many years ago now when the
term 'People with learning difficulties' was first being recommended as
a less stigmatising term, it was not long at all before I saw the first
recruitment advert for a post using the throughly stigmatising
abbreviation: 'Working with PWLDs'. Best intentions soon go awry.
This is such a GREAT discussion! Thank you for raising it! I agree with many points raised thus far but wanted to weigh in on the idea of normalization. I think one of the challenges here is the assumptions that get raised with our current meaning of the word “normal” vs what was initially meant by “normalization”. My understanding is that normalization means a slightly different thing. Bengt Nirge and Wolf Wolfensberger seemed to be discussing more about people with disabilities participating in and having access to the patterns and routines of everyday life that others who do not have disabilities are able to participate in. Keep in mind that these principles were also developed at a time where de-institutionalization was beginning (thank goodness!). My understanding is that it's not about dismissing or ignoring the disability. It is also not about trying to make the person “look normal/act normal in public”. It is more about allowing that person (in whatever way THEY determine) to participate in daily social life. That means having access to education like any other person which would lead to a job like most people dream of. It means not having to live in a space with too many people (ie: institutions where there were far too many people in one room) and having access to private space. It means having a daily rhythm that makes sense to them and appreciates the developmental stage they are at (ie: not assisting or worse – insisting – someone goes to bed at 8 pm because it’s convenient for the group home staff or family). I could go on but I think I am making my point. Let me know if you want more details- I am happy to continue examples. The big take home here is to facilitate (with principles of self-determination) a normal routine and rhythm of life compared with others in their age/stage of life.
Thanks for your time.
I'm pleased to see how much interest continues in this topic!
To clarify a bit, In my first comment I used quotation marks around the word "Normalization" to indicate this is the title of the seminal book on this topic by Dr. Wolfensburger. He has dedicated his life to improving the lives of people whom much of the mainstream of society have rejected. His work and thought have had perhaps the greatest impact on their lives, particularly those labeled as Developmentally Disabled, of any person in the last hundred years.
If you're interested in serving and learning from these individuals, I urge you to read this book. In addition, his brilliant program assessment tool, PASS, will quickly help any Exec or Board Member see just how much further we need to go to practice high quality service. I know first hand! I've used the tool to evaluate programs, including attempting to raise my own to those very high standards.
Charlie Baker, Retired Child Welfare CEO