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I am so sorry. That's the reality that many people in my country can't see, or are refusing to see. It's terrifying, and dystopian is not an overstatement.

@nell_tyler_warninghonestyahead 🫂

Thank you xx It's definitely both bigger and smaller and political ideologies - it's about the meeting of people's basic needs, and whether or not the new leader of the country wants to do that.

I'm very glad that life is good for you, I know that many people with disabilities are living good lives. However, that doesn't change the fact that Trump's policies are not designed to help people with disabilities in the way that Biden's were, and I'm very concerned that those who are living good lives now might not be able to as things change.

Please do share it. It broke my heart making it, knowing that I too know people who admire and support Trump. I just hope that if they actually stopped and considered what he thought of those of us with disabilities and the way he'll affect our lives, they might reconsider their support.

That is terrifying, both in its content and in the fact that it didn't shock me.

I'm so sorry people took away your freedom to love your stuffies openly! I remember having friends in primary school who played with their stuffies with me, but once we got to high school it wasn't 'cool' anymore, and if I brought my stuffies to school they'd act like they'd never seen then before, even though they'd played with them the year before. It's so sad that our society tells people to grow out of something so precious!

Absolutely corruption. The system is completely broken. I am so sorry your needs haven't been met, it's disgusting.

Part of the problem is that less common conditions aren't seen as required knowledge for doctors, so being aware of the research from over ten years ago is seen as satisfactory, even if it's harmful. I've known doctors who fully supported Graded Exercise Therapy for Chronic Fatigue Syndrome, even though it was proved to be harmful a decade ago, and stopped being used in most countries. And yes, the knowledgeable doctors are few and far between, and those who need them are often unable to travel easily.

@@nell_tyler_warninghonestyahead Definitely agree re: most docs being about a decade behind. Graded exercise therapy for CFS sounds awful.

@rawnoob2143 I was in a rehabilitation hospital being treated for CFS and Fibromyalgia, and they wanted to do Grades Exercise Therapy - building up to four hours a day, and they hadn't heard of Post-Exertional Malaise. I tried showing them research papers, but because those papers weren't espoused by Australian medical communities, they just dismissed them. It was wild.

@@nell_tyler_warninghonestyahead That sounds like a disaster...4 hours is unmanageable even for most able-bodied people. I think it's been known for a long time in ME/CFS circles that post-exertional malaise can come even after a few minutes of activity if you have ME/CFS and that the malaise can last days to weeks. I've had situations where I've shown research papers, and the doctors didn't bother to look at them.

That's so concerning, but believable. I'm working on a video right now about what Donald Trump's presidency will mean for disabled people in the US, and his policies are concerning enough, but knowing that information makes me even more worried.

@@nell_tyler_warninghonestyahead That should be a super interesting video. I still can't believe he won. My parents were campaigning for Kamala Harris (I couldn't cuz of my illness, but I still voted for her), but it was all for naught. It really sucks for disabled people, because we don't have the ability to go anywhere else.

Yep, it's harmful rhetoric. All someone is saying is, "you should have let someone else get scammed instead of you." Because if we just stop ourselves from getting scammed, but don't stop the scammer, then someone is still going to get hurt - it just won't be us. But I think that's enough for some people.

@@nell_tyler_warninghonestyahead Hmmm, haven't heard it put like "you should have let someone else get scammed instead of you." That's probably exactly what they mean. Damn. That was a super insightful rephrasing.

@@rawnoob2143 I heard similar opinions at a time when there was a known sex-offender lose in an Australian city, and women were told to stay safe and stay home, but not a lot of efforts seemed to be being spent on catching the predator. Many women realized what this attitude was actually saying - "make sure some other girl gets raped instead of you - because he's going to rape someone, that's unavoidable. Just make sure it's not you this time."

@@nell_tyler_warninghonestyahead That sounds horrifying. Seriously can't stand victim blaming and assumption of inevitability of perpetration by the perpetrator.

It's hard when we can be so unsurprised when a government takes our fundamental rights away.

@nell_tyler_warninghonestyahead That's not all they did. Once again, the disabled get thrown under the bus and nothing is done.

Wishing you all the best as you work through this and grow, and hoping there'll be some wonderful and fulfilling new friendships in your future xx

Thank you xx I'm definitely just doing them when inspiration strikes me now, and trying to get back to comments when I can. I have read about a prospective environmental and nutritional doctor, but it's all about the travel and money to commit to setting up a new doctor relationship.

@@nell_tyler_warninghonestyahead I hear you re: the time and money. Dropping tons of time and money on a dead-end doctor's appointment is so incredibly frustrating.

I'm so glad it was helpful!

Yep, true colours absolutely on display.

That's it, they're the lesser of two evils. We're better off with a prime minister that makes ableist comments - what a sad state of affairs!

​@@nell_tyler_warninghonestyaheadit is sad really. Labor the party that's abandoned their core demographic and state they don't want to leave behind for the middle class and wealthy vote but are still better than the alternative.

Getting a diagnosis late in life really shines a light on so many things!

Absolutely! There's no nuance. And when I was inquiring to have therapy included in my NDIS plan, they said they don't fund therapy if the thing you need to talk to a therapist about is the trauma of being disabled 😮 That's something that affects me everyday, and they're expecting me to just go through the underfunded general system for it? It was only my autism diagnosis that allows me to get therapy funded in my plan.

@@nell_tyler_warninghonestyahead I got told to hold on to my mental health diagnoses as I would get better supports under them than I would for level 1 autism. It is another example of them assuming that highly verbal/articulate means that you have low support needs across the board. Even more concerning is that on the face of it they should support ADHD (if you are using the 5 criteria) and the stated reason that they don't is that they say that the recommended treatment is medication and therapy and the therapy can be done with the10 Medicare appointments. It shows that they have zero understanding of what ADHD actually is (I don't have ADHD but am aware of it because of how much overlap there is with autism).

Thank you so much!

Yep, the disabled access rooms are often more than a standard room. The only reason they're a little bit bigger is because I'm in a wheelchair, so they're openly charging me more because of my disability! And the amount of places that claim to be disabled access but then show me a picture of their bathroom and it's clear no wheelchair could ever get into their bathroom or into their shower or close to their sink is just pathetic. They'll put a railing in there and call it done.

"Whatever happened to having fun together?" I'm experiencing this so hard rn. I'm so sorry you've been feeling used and depressed. Friendships should still be fun at the end of the day. You should be able to care and be cared for. To share the bad, AND the good. equally. i hope for that for you stranger.

Thank you for such a kind reply to my (somewhat childish, in retrospect) comment. 🙏 Life is hard and we need to support one another as best we can. And learn to see the many positive things instead of marinating in the negative. Wishing you many happy days.

It's not childish at all! I think the best way to handle reaching out to a friend is to say, "I'm going through some things and really need to vent, are you up to taking some stuff on right now?" And then the person can say, "I'm sorry, now isn't a good time, but maybe tomorrow I can sit down and give you some time?" And that needs to be a reciprocal understanding, where you can do the same thing with that friend. If friends are ONLY reaching out to you to vent, then they're treating you like a garbage bin, where they can dump all their shit and then go on their merry way and enjoy life with other people (that's been my experience sometimes). You are worth more than that. You should be able to expect a friend to reach out and it be a positive, uplifting conversation sometimes, not always a draining one.

That's my fear as well. They claim to want to target fraud, but the main target here is the participants. I would have preferred to see legislation that was about more hoop-jumping for providers making claims, more ease for participants making complaints, more smooth processes for participants inquiring about their own funding so that we could be aware and not be victims of fraud. Instead they're basically saying, "you're not playing with your toys nicely so we're going to take them away." And this bill being passed despite disability advocates thinking it's awful is so incredibly ableist, it's almost unbelievable. (almost)

This is already happening to me.

Yes, they say they're looking after people, but they're not even listening to the people they say they're looking after!

@anneelizabethrose4760 I can't speak for anyone else with a disability but I'm tired of being told to sit at the back of the bus. High time for people with disabilities to fight for their rights. Able-bodied, mentally-sound people need to stop disregarding disability. It happened to Superman (Christopher Reeve), it could happen to anyone. Something everyone should keep in mind.

@@sharonjensen3016 Absolutely. It can't be an 'us and them' attitude when it can affect anyone. Everyone needs to look after disability rights, because they never know when those could be their tights.

It's so sad that we've learned to expect this behaviour and this treatment. I think I was one of the first in my state to get approved for the NDIS for Chronic Fatigue Syndrome, and it's been a battle. They fight me on so many things, showing either a disregard or a lack of understanding for how chronic illness works. Like you say, I'm not their 'sort of disabled.' While I have a dear friend with intellectual disability, and she can get anything she needs, because her disability is accepted, understood, and unquestioned. We are not given the same respect.

@@nell_tyler_warninghonestyahead So true. In my last plan review one of my long term goals...to eventually figure out how I can work and sustain working so I'm not so poor, optionless and vulnerable....was laughed at by the lady doing the interview. Total lack of respect. On the one hand she treats me like I must be lying and my providers must be lying about my issues because I'm articulate and intelligent....yet on the other hand she treats me like I'm a lost cause for ever being able to improve my life to the point where I would need far less support. I work so hard towards this goal even now because I long for peace and not having to tell anyone my personal business and beg for help anymore. I don't think any of them understand how awful that is. The thing that utterly frustrates me is that if given the support I've always actually needed, for say 5 years consistently, without having to spend hours and hours on admin and workers, support coordinators etc who are not actually trained to help me properly....meaning I have to train them. I know that I would be able to improve my functionality. For a couple of years, with the right support, I improved so much. I managed to pull off major life changes that I'd always dreamt of achieving so I could finally get safe. Only to then have the very supports that had been working removed. Apparently for psychosocial participants there is a cap on the capacity building budget and even though I have proven to them that I cannot access appropriate therapeutic support from the mental health system (hence I'm on the scheme after being disabled by that system) they insist that it is that systems responsibility. So....I fall through the cracks yet again. I wonder if their new assessments will be as useless at understanding my issues as all the previous ones have been...most people have no understanding of DID at all and I've recently been told that you can't even use the word trauma with the NDIS anymore 🙄🤦🏼‍♀️🤷🏼‍♀️ Thanks for your contribution in this space. Nice chatting 🙂 we just keep fighting hey!

@@livi2792 I remember talking to the NDIS about getting therapy, and the lady was like, "nah, just get the mental health care plan," and I told her I needed to see a therapist every 2-3 weeks and that was far more than the mental health care plan allowed. She asked why I needed therapy (they have no idea what it's like needing to answer to people for every detail of your life) and I shared that a lot of it was the trauma of literally being disabled, of the damage disability had done to my life. She said the NDIS didn't fund mental health support when that support was needed because of the disability - so if a person developed severe depression because of becoming disabled, and wouldn't be depressed if they weren't disabled, the NDIS were like, "nah, not our responsibility". It was only when I mentioned my autism that she agreed they could fund my therapy. But I literally said to her, "maybe if I commit suicide the NDIS won't have to worry about spending money on me at all." She was offended. I didn't give a shit. She wasn't even trying to be compassionate. I'm also going through the court system right now to appeal the NDIS decision to not approve my new bed (my old bed is uncomfortable and was the wrong choice, and I'm in a relationship now and need a double). They're fighting me over $4,000. But then, in another decision, when I applied for accommodation, when they refused me, they gave me an extra few hundred dollars a week to help with community access, to 'build independence'. Even though I told them I don't use NDIS workers for outings, I go with my partner. So they gave me the equivalent of thousands of dollars a year for something I don't need or want, but won't give me that same amount as a one-off for something I absolutely need. There's no sense, no rhyme or reason in how they approve things.

I am so sorry that you are fighting something so basic through the courts. It's so insane of them. Way too common though. In my last plan the delegate decided that my plan should have funds in it for a behaviour support plan. Two professionals I asked to be present via video link up in the meeting with me, told her that was totally unnecessary and inappropriate for my needs. She didn't listen and put it in my plan anyway... money I can't use for anything useful sitting in my plan too. Who do these people think they are! I just don't understand why they have so much of an issue with funding therapy for people....in their new list it says that acute treatment is the responsibility of the mental health system....what I need isn't acute treatment.... it's literally to help me learn to people effectively and manage the situations that arise with untrained support workers and others I have to deal with like the NDIS and support coordinators etc....how is that not capacity building? Unfortunately it's one thing for some and something else for others all the time with them. I LOVE your comments about suiciding to stop costing them anything....I almost spat out my cuppa reading that! BRAVO!!!! Wish I could say that kind of thing in the moment instead of freezing and going silent when I'm yet again shocked by their disrespect and ignorance. Man that must have felt good!😂

@@livi2792 I used to freeze up a lot when talking to them. But then I got kind of powered by anger... It's like the anger and injustice take over and my anxiety takes a backseat. I think the fact that I'm doing advocacy online helps too, because part of my brain switches into 'Advocacy Nell' and I fight the system like my life depends on it... which it does. When I started a phone call with the Administrative Appeals Tribunal to discuss an appeal for my bed, the registrar was like, "I just want you to know this isn't adversarial, there are no bad guys, there are no sides to this, we can be impartial." And I said, "I'm about to talk to the people representing the NDIS. The NDIS are an insurance company who said no to me having the bed I need, and these guys are representing them and their job is to support the no. It's their job, and it's my life. Forgive me if I take it pretty personally." They just don't know what it feels like for us, unless we tell them. And I'm happy to tell them! I know a lot of the people we talk to on the phone can't change anything. And if I get the sense that someone is compassionate, then I'll share how I feel gently, if I can. But if someone is giving me bullshit, I'll tell them straight how I feel.

It's so disappointing. I've also been a supporter of the ALP, because I felt they had the public interests at heart. I felt that Bill Shorten could be trusted with the NDIS, and I felt that Anthony Albanese could be trusted to take care of public health and well-being. I feel so let down. I was reading an article where Bill Shorten was being told that people with disability and disability advocates felt betrayed by this legislation. He basically said he couldn't please everyone or make everyone happy, and then said, "the sun will come out tomorrow." Easy for him to say - for those of us who rely on this system to get out of bed tomorrow, the fact that he's just rocked our chances of having our basic needs met means the sun might not come out tomorrow after all. And bringing this bill through, in spite of opposition from the people it's meant to help, is the most ableist thing I can think of. It's disgusting. I'm so sorry for your experience with the public service sector, I wish it was an uncommon one, but it's not. They tell you to jump through the hoops, and then they don't tell you where the hoops are! And then say the system will reward the people who put in the work. Unbelievable.

@@nell_tyler_warninghonestyahead I believe the problem with Labor is (I was once a member but recently, just after the bill passed in fact resigned) is that the attitude of Bill Shorten et al doesn't surprise me at all. Labor, perhaps like most political parties are ologarcarcys, they live in very protected worlds of affluence and privileged (no matter what there gender or background is) that is very removed from the reality of 99% of the population, the disabled and poor especially. Its easy for them often (no matter what party there in) to forget what being disadvantaged is like, when they have several investment houses, and the hardest decision they make is what type of coffee to get in the morning on the way into the office. Often Labor, liberal, greens (often but not always) go from nice middle class school and family to university, to well paying (canbera, union or business) job to well paying job as a politician. They aren't disabled, never been long term unemployed etc and don't know or care because there rich.

They hav walked away from disabilities, and you can’t go to the liberals federally on this matter as they think enabling labor go hard on the cfmeu was worth trading in hesitation on the ndis bill and not standing in the way

Shorten is a slimey liar and he never cared for one second about any Australian living with disability.

I'm so sorry. It makes me so angry when someone goes through abuse and people say, "why didn't you go to the police?" Even if we do, even if we went through the whole process and re-traumatised ourselves, they barely get punished. I'll never get justice for my abuser because I have no evidence, I was 19, he was 28, it was a he-said, she-said, and I only realised it was abusive years later in therapy because he did such a good job of gaslighting me. Police would laugh me out of the room because I have nothing. And even if I did, the 'justice' I get wouldn't be much. It's disgusting.

Yep, plenty of us are mentally ill but we don't commit crimes!