(written by N.M. Rose Guedes)
If you would like to socially connect with me that’s awesome! However, please consider reading over my social disclaimer to understand my limits. I’m fighting illness, pushing to get my work done, and I have a family - so I’m very limited in energy. Please be patient with me. I’m always open to more help with music and promotion. If you would like to help and/or are interested in sponsoring my work, feel free to contact me - I look forward to hearing from you.
No Tolerance For Bullying:
I’m dealing with a lot fighting a serious and painful illness, as well as continual life stress related to that especially. I will not tolerate any bullying, abuse, cynicism or mean angry words towards me. Respectful constructive criticism is fine. But please be respectful of my reflections and viewpoints, especially when it comes to sharing on my “Real and Relentless” blog and video stream. You may not agree and may have a differing viewpoint, and that’s fine, but I ask for respect and courtesy.
I have dealt with inappropriate bullying and abuse in the past and today I’m the process of healing. I still encounter mis-judgement due to the way that I am and communicate. This is because I’m on the autistic spectrum and also deal with some neurological issues related to being sick and how that sometimes affect my brain (see “Communication” below.) At times I have challenges with my speech and diction. I tend to use many annotations on videos to help me (especially on Real and Relentless.) You will probably have to pause the videos, to read them! I am more challenged than I may appear. If you don't understand, consider educating yourself and/or be respectful and move on. My motives are genuine. Making a pathalogy of and/or bullying me for expressing my art, artivism, mission, modelling or album-by-pledge fundraising will not be tolerated. No disbelieving and ‘faker’ accusals will be tolerated. My health condition is diagnosed and definitive. The way I often present may cause my health condition to be less apparent. I may appear strong because it’s how I am. This is because I am determined and defiant, not ‘claiming’ something untrue. My ‘claims’ are confirmed, by fact (see below.)
If you want to support me by sharing my work and helping to spread the word and/or pledging for a music album, I deeply thank you. I’m in a difficult position because I’m stuck in a country that does not understand (and will not learn or fund) best care medical practices for my health condition, EDS. For this reason it treats patients like me quite poorly. I am fighting for life, and have felt it necessary to try fundraising, as well as selling my work in order to try and raise the funds I need for proper medical treatments and better security and future for my family. I also do it because I love it and am ‘living my dream’ to the best of my abilities. I’m doing my best and what I can in my position. I’m hoping to have fun, while making a difference, while trying to help myself. Support, understanding, compassion and respect are welcome. Negativity, cruelty and abuses are not tolerated and will be blocked and deleted. I also believe people within minority communities should try to respect and support their peer, and be happy for them, instead of trying to tear them down - even if they’re not a ‘fan’ of the persons’ work, per se.
Though my health condition (Ehlers-Danlos syndrome) is unusual, considered ‘rare’, and is somewhat invisible (especially to those who don’t know how to identify EDS) it is very serious and very real. Although I may look 'fine’ and/or well dressed sometimes, and thus seem 'well' in photos when I’m dressed up and trying to present well - my mobility is compromised and I am physically weakened. I am in later stages of this illness and it is unfortunately quite progressed. This is especially obvious to those who know me in real life, beyond the internet. There is an ugly side to my battle which I do not share in great detail. For years my unusual health problems and reports of them were treated like they practically 'didn't exist' and were not worthy of being heard. I’m now past that. Today my health is very challenged. I am trying to emotionally heal from the past. My diagnoses are factual and confirmed. I will not tolerate any more ‘faker’ or ‘exaggerator’ accusations. EDS is a painful and debilitating condition which can sometimes be life threatening (info brochure here.) In light of that I ask for respect and courtesy. I’m a determined person. I try to rise above, preferring to present better moments, which can mask being ill. Sometimes I reveal the tougher moments, but only sometimes compared to what is, and only for awareness. Facts are facts. End of story.
Regarding "attention seeking”
Please respect the way that I expresses myself as a music artist, amateur model and advocate (community and self advocacy.) I’m doing this because I love and feel passionate about what I’m doing. It’s a good escape from pain, to an extent. Please note that I’m often seen using modified bracing on my body (such as the neck braces) due to the fact the EDS causes areas on my body, like joints and C-spine, to be weaker and prone to injury. With the neck brace especially, it is for my safety. I am not wearing those things for ‘attention’ - but for medical purposes. I ‘modify’ them to suit my physical needs better, and because I like to be stylish. End of story.
In terms of my work and art, critics have sometimes thrown the accusation of being "attention seeking." Well, yes, I sometimes do "seek attention" - with purpose. Other times, I wish to have privacy. This is actually to be expected among self-advocates seeking to raise awareness, and it's absolutely to be expected with anyone involved in the performing arts. So yes, I aim to gain specific attention - to my art and work. This is not only normal, but in a positive way for the purpose of making a difference, for increasing awareness and in this being helpful to others (as well as myself.) Therefore, using "you are attention seeking" in the context of an insult sort of makes no sense, has no fair base, and distorts the reality of what I am actually doing, as I decide to put myself out there for the reasons I do.
Communication (especially when it comes to blog/vlog stream)
I am diagnosed on the autistic spectrum (formerly asperger syndrome.) I also have neurological difficulties due to my health condition. I also deal with post traumatic stress disorder. Though I’m smart, I have processing and communication disabilities and differences. With being autistic plus the other stuff, I may not communicate in a typical way. Sometimes communication is a struggle for me. Sometimes I have challenges with speech. However, I’m determined anyway, and this may come across. The ways I express may seem odd or different to you. There are reasons. I am quirky and and idiosyncratic. Sometimes not all of what I’m thinking meets my lips properly, which can be frustrating. This is why I tend to use many annotations in videos, to help. I may ramble or express or word things a bit differently. Sometimes the way I express may even get taken for being a 'dishonest performance' or seem 'melodramatic' - because I can seem ‘animated’ but with an odd flat-ish affect. This is due to autism and fatigue, and it’s just the way I am. Though I may express feelings and emotions in a different way sometimes, (which happens with autistic people) they are valid. Consider learning about this and shifting paradigm with an open mind, rather than judging.
If you aren’t sure about something I meant, ask me. You may be surprised to find I meant something different to what was assumed. If you do not agree with some of my viewpoints, that’s fine - but please be respectful.
Please respect my viewpoints in terms of what I share on youtube and blogger. I am exploring, pondering and figuring out how I feels about the social/political scene at this time. I do not always have time or energy to read up on everything, so if I am wrong about something or a fact has been updated/changed, I will try to correct it. I may also not be interested in ‘all the details’ but rather, just expressing how I feel, my current ‘take on it’. I will make this clear when so. Please be respectful. I am very socially liberal, though I may be moderate about certain things. I prefer to identify as 'independent and freethinking.' My viewpoints may evolve over time. I seek balance and moderation, and prefer peace. I support better communication, less polarization in thinking, and more mediating among activists. I am really striving for this myself.
If you don’t like what I have to say or present, that’s fine - but do not attack me for it. I don’t have a problem with someone peacefully expressing a different viewpoint, unless it is blatant bigotry ie. racism, homophobia, ableism etc. Violent arguments over varying viewpoints happen too often in comment threads, and I do not wish to engage in this. People have had different experiences that may bare validity. Please strive to respect my expression of my viewpoints (even if you may not agree) and I will strive to respect yours if they are not communicated violently.
Thank you. “