Can accessing services be “harmful”?

So, here’s the question: Is utilizing services that come from medical models of “disability” harmful?

It’s a thought provoking question, and not limited to neurodiversity. There are people across the spectrum of diagnoses, from deaf to wheelchair users, that don’t want to define themselves as having a disability, and also disavow the feel good term “differently abled”. And there are many more who embrace the term disability and feel “differently abled” is a way to avoid responsibility to accommodate disabled people.

Many institutions consider moving away from the term “disability services” as a title because many clients don’t see themselves as disabled. Many college now have “Student Accessibility Services” or the “Center for Accessible Education” But the “Disability” title is sometimes the best way for new clients to find the services. And for those who do identify as disabled this new branding may seem to be a way to sweep their true need under the carpet.

This all is a debate for another time, and really without an answer except to say that people are different and the ways they identify are unique to them.

But on to the question about whether accessing services can potentially be harmful (and services for the disabled community have been harmful, there is no doubt about that). But for this post I will just say, for now, that the answer is….it depends. On the service, the purpose, how it is delivered, why it is delivered, and the life experiences of person receiving services.

I have seen teens and young adults reject the ASD diagnosis and services because of trauma related to being “different”, shame, lack of knowledge, and fear.

Others suffered at the hand of “well-meaning” professionals and systems that tried to “cure” them, subjugated them, and treated them as broken and needing to be fixed to be more neurotypical.

I have seen ASD people treated unfairly, unjustly, and from a place of bias and ignorance, old frameworks, and stereotyping, (although this seems to be happening so much less now vs even 10 years ago).

In these cases, real harm has been done.

There are many adults, and many of them professionals in the field or influencers in some way or another, to whom this may have happened and it definitely colors their opinions, guidance and practice. And that’s a valid perspective.

But, I will offer another perspective, of many valid perspectives.

Here is the societal model for disability.

Our society and its institutions are built around an arbitrary and fictitious neurotypical norm (whatever that is): K-12 school, college, work, citizenship, even things like going to the store and participating in organized activities like sports or community events. Being able to participate in any of these fully assumes a certain kind of brain functioning, physical ability, speech patterns, thinking patterns, sensory processing, social understanding, etc….

Most people‘s body and neurological functioning falls within the range where they can easily meet or can cope with the expectations and function fine.

Some people don’t.

In this way of thinking, it’s a mismatch between what each person is arbitrarily expected to engage in as part of society and what a “disabled” person has the ability to do. For example, it’s arbitrary to have steps up to the post office when a ramp would meet more people’s needs.

So, the services that are offered as part of the ADA, vocational rehab, SSI, and for those with developmental disabilities in California the Lanterman act/regional center, are there to address the mismatch between the way a person functions and what is arbitrarily expected or provided by society and its institutions.

It is an inelegant way to address issues of equity one person at a time….. rather that address it as part of the societal structure (although the ADA has done that to some degree with adjustment to public spaces and events being mandatory, and maybe now at risk).

It’s about this little graphic (I’m not sure who to credit for it):

Personally, I would recommend a client access any service that is offered and available to help with whatever the client needs help with. Period. If it’s available and they need/want it, take it. Being disabled in a society that is not always kind and accessible and fairly structured for people with disabilities is not easy to take what is due you.

AND…… at the same time use the opportunity to engage the provider in conversation and education about the any concerns with assessment, goal writing, and provision of the service. This could be the regional center, or DOR, or your insurance company, or local Community College DSP or whoever. I’m certain it’s a conversation they have heard and participated in at a professional level, and could probably stand to have again. Change develops over time and sometimes one client interaction at a time.

Working with any given service does not mean a client needs to adopt any mindset they may have, just as I might seek needed help from doctors but not necessarily agree with all of their views on illness. It does not mean they have to do everything that service provider has to offer. And it does not mean they have to accept a service without question or collaboration to make sure the service meets their needs.

The social model of disability (vs the medical model) suggests that we are disabled by our environment (vs. something intrinsic to us), but the disability and mismatch still exists and may necessitate support to navigate the societal environment as it currently exists. Also, disability related challenges, say for an autistic person, may sometimes arise from or be exacerbated by other conditions such as anxiety or depression, rather than the disability per se. These conditions may also result from their interactions with their social environment, but are real, nonetheless.

So….the bottom line. Accept the services but be an active participant, expect collaboration vs being dictated to from the service provider, remember the societal model of disability vs the medical model, and always come from a place of wholeness and power.