5 ‘takes’ on disability for parents of children with disabilities

In late April 20222, Facebook users interested in disability issues and culture liked and shared a post from “Diary Of A Mom”. In it, the mother of a young woman with autism describes a series of pleasant and refreshing encounters at a mall and a Build A Bear store.

At first glance, the post seems pretty typical of the memoirs and vignettes shared on social media by thousands of “parents with special needs.” But this position was something different. It was both positive and extremely realistic, and both proud and confessional. This has not gone unnoticed by a number of disability activists who are often wary of disability stories shared by parents, which tend to be sentimental or horrifying, self-congratulatory or self-pity.

In the mother’s account, store employees and customers are curious about her daughter’s unusual ways, but not hostile. The young woman did not receive the kind of public reception that many children with autism and other disabilities receive – clumsiness, coldness, even irritation. The mother maintains that she clean sincere acceptance and lack of embarrassment in regards to her daughter encouraged others to adopt the same attitude of acceptance. The mother’s calm and open approach to her autistic daughter demonstrated how they should behave towards her themselves. They seem to have followed his example.

But what makes this message even more significant and unusual is that it is also a confession. The mother does not congratulate herself. The point of her story is that her approach to her daughter’s disability hasn’t always been so positive and assertive. She was more anxious, more focused on controlling her disabled daughter’s unusual behaviors, and more embarrassed by them.

“The message I was inadvertently sending my daughter was horrific. That I was ashamed.

She is more relaxed now and no longer ashamed. It’s not only much healthier for her daughter, obviously, but also for the mother herself, and a much better example for everyone her daughter meets. This mother began with a kind of “point of view” on her daughter’s disability. Now she has another. The story describes one parent’s distinct and admirable change in their approaches to autism. But it also highlights the more general importance of how parents understand their children’s disabilities.

It’s not just about specific parenting decisions, approaches and techniques, but about parents’ broader understanding of the disability itself. Whether they realize it or not, parents inevitably adopt one or more approaches to disability. It’s partly unconscious, but it’s also a choice.

And from the perspective of the disabled person, the medical care, therapies, adaptive equipment, services and educational approaches that parents obtain for their disability may be less important in the long term than the basic “taking” of parents about disability.

But what are these “takes”? Here are five of the most common ways parents and families of children and youth with disabilities understand and conceptualize disability – and how they view their role in the lives of their children with disabilities.

1. Disability is a grave misfortune and an encroaching enemy.

From this point of view, disability is something that must be fought and overcome.

Most parents are educated about their children’s disabilities by medical professionals. This tends to encourage parents to fight disabilities the same way people fight a disease, like cancer. This negative and beleaguered view of disability is most easily recognizable in language habits. Children and young people with disabilities are said to ‘combat’ or ‘overcome’ disabilities, not ‘adapt’ to them – much less ‘adopt’ them.

This mindset makes sense. Many disabilities are caused by medical issues, and some of these can at key times be helpfully reduced by medical treatments and therapies. And people with disabilities certainly face many kinds of adversity.

But in general, disabilities are permanent conditions that become part of the lives of people with disabilities. A perpetual war footing against disability is neither sustainable nor healthy for parents, and especially not for their disabled children. Ultimately, “fighting” one’s own handicaps amounts to fighting oneself.

2. Disabilities are inconvenient.

From this perspective, disabilities make children visible, difficult and off-putting – and this must be hidden or concealed with constant protection, therapies and intensive training.

Parents of children with visible and apparent disabilities understandably fear that their unusual appearance and behavior will cause others to exclude and abuse them. Although it is hard to admit, some parents also clearly fear that they themselves will be stigmatized by association with their children with disabilities. This sparks a different kind of struggle – not necessarily to fight disabilities themselves, but to make children and young people with disabilities look and act as ‘normal’ as possible in order to blend in and feel. be accepted.

It is always good to teach children how to get along socially, how to make a good impression and avoid stigma as much as possible. Learning to be kind, cooperative and sympathetic is an essential part of growing up, with or without disabilities.

But these efforts often go too far with children and teens with disabilities, who can quickly become over-programmed, smothered, and feel unworthy by constant efforts to mold them into a parental view of a more “normal” person. Instead of better preparing young people with disabilities for adulthood, intensive therapies and behavioral interventions can easily end up making them feel worse about themselves – as if they were somehow wrong. and needed to be corrected.

3. Disability does not define you.

From this point of view, disabilities are just collections of impairments and practical obstacles, and are otherwise not important to who a person is.

This “approach” to disability is quite popular, partly because it offers specific and seemingly simple formulas. Don’t think about your disability or pay any attention to it unless you absolutely have to. Don’t spend too much time complaining, pleading, or waiting for help. Focus on specific practical accommodations, accessibility and equal opportunity issues only when they arise. Disability is only a challenge, an enigma to be solved, nothing more. In this way, many parents try to raise the morale and self-esteem of their disabled children by minimizing their disability.

There are many ways for a person with a disability to define themselves and shape their life. And no one should feel trapped by disability in a narrow field of attitudes, personality traits or life choices.

But it can be just as compelling for people with disabilities to aggressively deny or reject any the influence of their experiences of disability. Disability can be part of you without entirely defining you. And exploring the broader meaning of the experience of disability can be very rewarding.

4. Disability builds character.

From this perspective, disabilities are challenges to be overcome – an opportunity to develop and display character.

Parents can turn to this idea to offer their children at least one version of this superior and coherent meaning. It is one of the most familiar and accessible ways for parents to help their children and adolescents with disabilities explain their disability. The idea that the challenges of disabilities make you a better person promises to help people with disabilities develop a positive life purpose that incorporates rather than ignores their disabilities. And it relies on one of the few ways that society instinctively admire people with disabilities — through the idea that hardship builds superior moral character.

Overall, it’s probably better to think of your disability as giving you a special purpose in life, rather than seeing it as a nightmare of random, meaningless struggles and suffering. It can also be a good starting point for children and young people who may not be ready for more nuanced thinking about their disabilities.

On the other hand, suffering and deprivation are not always ennobling. Inaccessibility and ableist discrimination are bad things, not character tests. And in the case of people with disabilities, they are usually not necessary. rather than automatically to celebrate difficulties, in the long term, it may be better to try at least to prevent this.

5. Disability is an identity and a community.

From this perspective, disability is a social identity that can be accompanied by discrimination, but also by pride in the culture of disability and support for other disabled people.

It starts with something as simple as meeting and developing friendships and partnerships with other people with disabilities. It’s not something that most parents seem to prioritize, or even deliberately think about – at least at first. But it can be an important first step towards a much richer understanding of disability. While disabilities certainly have very individual medical roots, many, if not most, of the impacts of disability stem from the way people with disabilities are viewed and the place they occupy in society.

The social stigma, exclusion and discrimination that people with disabilities experience may not seem to parents like something their children with disabilities should ever embrace. And it is tempting to think that ableism will disappear if it is ignored, and if children with disabilities assert their individuality and avoid being perceived as a member of an “oppressed minority” based on disability.

But the camaraderie, support and unique culture that people with disabilities can only produce among themselves is invaluable and worth at least the gaze of children and teenagers with disabilities. Connecting with other people with disabilities and with communities and organizations of people with disabilities can help people with disabilities of all ages feel less alone and more like part of a fully legitimate and equal segment of society.

Of course, most parents and families embrace a mix of these views and perspectives on disability. This is a good thing. Some approaches and philosophies are more appropriate for different specific situations, others less so. And as “Diary Of A Mom” ​​points out in its Facebook post, changing your accent is always possible – and often valuable.

The most important message for parents of children with disabilities may simply be to be aware of these different ways of understanding disability and to be honest about which ones they choose – consciously or by default.

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