Current page for OCD Definition doesn't address the suffering of people with OCD

[jeevajay]

To be clear, I'm fine with the brief definition at the top. But how the page is labeled and the other details underneath the definition is harmful and alienating. For context, please check this another issue first: https://github.com/selfdefined/web-app/issues/310

The Issues section focuses on the context and perspective of some Neurotypical people who misuse the term. It didn't speak about the stigma, abuse, and discrimination faced by people who are Neurodivergent. It's very offensive that the page doesn't even address the issue of Stigma at all. Personally, it's hurtful. It would harm and alienate the people who want to be self-defined.

I also want to acknowledge and validate the concerns of the current definer. Medical Appropriation is an issue but it's not the only issue. Also, it's an issue created by some neurotypical people, who also abuses and stigmatizes the actual sufferer. When the page prioritizes the Medical Appropriation without speaking about stigma, discrimination, and abuse perpetrated against people who suffer, it prioritizes the abusers.

Personally, I would like these issues to be addressed first:

1. Mental Health is still not accessible to millions who suffer. Many suffer in silence isolated by society.
2. Social systems built to benefit neurotypical people paves the path for discrimination.
3. People who speak openly about Mental Illness are shamed and harassed.
4. Many Women suffer without a diagnosis because of our sexist society.
5. Stigma isolates the sufferer from receiving needed help which affects every aspect of their life.

I'm gonna work on this and suggest changes for review, so the page can be updated to include perspective and issues of people who actually suffer. I also will be adding an issue for Medical Appropriation as a separate term. I strongly feel Medical Appropriation should also be a section inside the pages wherever it is needed and connecting to the term for a broader context.

I'm looking for feedback and suggestions from the Self Defined community and everyone involved with the project to fix this issue.

Thanks to @tatianamac for inputs and direction.

[tatianamac]

@jeevajay Thanks for filing this issue. I apologise for the harm caused by only abuser-centred terminology. The lack of individual perspective you're hoping to add to the term will help to address this; I look forward to your PR.

Re: medical appropriation: I recognise the limitations of the term medical appropriation both as a term and in its current usage. Again, this goes to a broader issue of not having all of our flags themselves defined. I will create an issue to define the flags because the lack of publicised information can create confusion.

[jeevajay]

@tatianamac thanks again. will share suggested changes over the next few days.

[codemacabre]

@jeevajay As the original author of the OCD definition, I also wanted to thank you for bringing this to my attention and apologise for harm I caused. As a sufferer of OCD, the impetus to write this definition was fuelled by an increasing number of personal experiences where the term was misused and created an unsafe space for me. I am still coming to terms with discussing it publicly and when I wrote the definition I was even less comfortable with doing so; I now realise that this was in itself a very self-centred and immature approach, and one that itself caused harm and I'm sorry for that. I'll certainly be more careful in future.

I'd be interested in collaborating with refining this definition if you'd be willing to involve me?

[jeevajay]

@CodeMacabre Hi Myles, as I acknowledged in the msg I completely understand your pov. Looking forward to working with you. I have DMed you on the Slack. Thanks much.

[jeevajay]

@CodeMacabre Hello Myles, when I responded yesterday to your msg, I was in a hurry to attend a webinar. I want to acknowledge a few things:

1. Your personal experiences matter very much.

2. Medical Appropriation and Misuse is real and hurts a lot of people. It should be one of the issues discussed on the page.

3. Speaking about suffering from OCD in public is very scary. So, I applaud for taking the step and setting the stage.

4. I don't think your approach is self-centered. As Self Defined is about Self, people will define using their experiences. We have to wait and see how this evolves as more and more people want to contribute to the same definition with different perspectives and experiences. Surely, there are gonna be a clash of ideas and experiences from a different culture, place, situation, etc.

5. And finally, I appreciate the apology and very much appreciate openness for change. At first, I didn't know how to react to this. There is no harm directed at me or anyone specifically. Also, this is all new to me. Anyway, just learned acknowledging is good for closure and moving forward. So, wanted to mention that.

I saw your msg on Slack. I understand. I will be adding suggestions for change here as comments first, so whenever possible share your views.

Gald to know you. Thanks. Take care.