Annie in wonderland

This is a post that I wrote in my head last night as I am in the middle of potentially changing supported living houses but staying with the same company and I can’t remember something heartbreaking. I can’t remember the last time someone physically said they love me, or I am doing good or congratulated me for doing something well, as my family often has concern for me, and I don’t see that my actions have consequences for other people. But please don’t feel sorry for me first and that my family and friends do they do it by there actions and this has lead me to some really interesting feelings of knowing I am an adult but at the same time feeling really alone in the world as I see my friendship group that are “ able bodied” go to work and have the arguments about the kids and I really feel like I have missed that boat on having a stable romantic relationship due to me not being able to really trust anyone and that actually includes myself and my support team in the house as they have

I was going to post this to Linked In but now after some reflection I didn’t and I feel it’s much better to hear Let me know what you think we see that people need to be aware that I am feeling this way and I see that this comes from a place of not being heard and seen. I can’t remember the last time that I felt seen or heard and got told I did something well, I got pitied or yelled at for doing things wrong, or breaking procedures/policies I didn’t know existed.  So, let's jump into it. So I was on this platform and I have been posting my content for a while and I do need to consider what I post given that this is a site for professionals and job seekers designed to connect them. However, I am seeing, and much to their credit disability activists posting their content and I don’t have much to do with my “activism” community in my area.  I thought that I would explain why why I don’t like the term “activism” and prefer spokesperson, as it gives a much more dignified tone and mu

  This is a bit of a different post and I hope it doesn’t discourage my readers but I feel it’s something that we need to discuss, due to the fact that many people want to save money but don’t know how and there is a facility when it comes to saving money call the bootstrap fallacy and it’s that you need to just be able to pull yourself up by your bootstraps and this isn’t the case if you are in debt or need to save money it can be hard when you have a disability and your country doesn’t offer a care program. So, this is going to be a basic practical list and yes it will be Australian, but I think anyone could take something away from it. ·          Do up a budget and see if it's possible to cut things from it. ·        Have a clearly defined needs and want lists. ·        If you need new clothes, can you get the decent quality that will last so you aren’t constantly re buying items. ·        Link into advocacy and other services that can help your quality for care and ot

   This is an update to the personal accountability post and development post, So the things that I have ticked off my list are. Making the physio appointment and I will be getting back on track with the appointments, for medical appointments and what needs to happen next. The one thing that I am now going to do is get my budget back on track as well, so this means for me no new clothes except bras and undies, and to hand make Christmas and birthday present as I am between paid projects as well. As well as preparing to move as well so this could be a massive issue as well, so it’s now focusing on what I need to do to get myself back on track and we are then able to help myself to help others and to have the ability to help others and we are seeing that people need to be able to work as a team. We are working towards being able to help others as well, so being accountable as well is a massive issue to me as I haven’t been accountable to others for a very long time and we need to b

  This is something that I need to write for accountability, so I have due to some personal reasons and some with changes in care staff have got out of a routine and have let bad habits creep drinking excess caffeine (though I have discovered that name-brand coke soft drink does give me some level of pain relief, from nerve pain) These things being. Binge eating at night. Not keeping up with housework Not having a good solid routine Not exercising enough to be able to keep excess weight off I am not talking to support workers when things are getting to me Not keeping up with my specialist appointments Not keeping up with friends Being over-tired due to having too much screen time Not keeping up with my physiotherapy Not understanding the role of support workers in my life Not keeping up with the housework I am responsible for and accountable for – washing and ironing clothes and keeping an accurate shopping list, Not keeping to a reasonable budget and allowing m

 This is going to be a short and sweet post and a post that I wanted to do and it is because people are starting to see support workers as not something to be ashamed of but they starting to be seen as a normal thing that people with a disability that have access to the NDIS might choose to use there are several forms of support and this is where things get complex. One is housing so this is mainly Sil housing ( supported independent living)  that has been established by a support provider and this depends on the person's needs and funding ratios, this is where ratios of support come in so this could be that you are either a 1:3 so that being one support worker to three clients, or a 1:2 or needing around the clock care being a 1:1 so this being one person to one support worker but in a housing situation its very rare.  I don’t like the term parents as we are the main character in our lives and not just a participant this is why I use client I know in some international governmen

 This seems to be a topic I constantly come back to as it is the backbone of the NDIS, and I am updating the blog as I learn more about support and I am not learning about it from a book or other “academic” sources. I am living it. So I am judging it by my own lived experience and this seems to be a good thing due to the fact that there is a definite difference between good and bad support and to go even further good and bad support workers. To put it in perspective basically those who understand the assignment at a deep level and for those who it is just a job, I see that some people have a unique combination of both of these, being that they understand the job is more than taking people out for coffees and are able to bog in and get the hard yards done so getting the house work done, getting a person into a good routine, keeping them in touch with family, friends and helping them to navigate these relationships with others and in a respectful ways. We also see that the general po

  So, I debated long and hard this post about writing due to the people involved and we are still dealing with the fallout, but I will do my best to censor myself and not throw myself under the bus. The first thing I need to say is that I am no angel and get tired of advocating for myself.   In the same organization. Most people who have disabilities that are in the higher functioning range are sick of hearing it, and sick of telling support workers what they need, or even being dictated to by agencies, But what happens when a support worker abuses their power and this happens more than you would think to the point that there is a term for it due to the prevalence, Its called being care resistant and it means that everyone when the client finally accepts care they have to do extra work to gain the clients trust due to the fact that they can’t trust the very people who are supposed to care for them. [i] I have on YouTube and on this blog written about being abused by support worke

 So safety does mean different things to different people, for people with a disability there are extra things to think about given that people with a disability are more likely to be the victims of abuse and neglect from the very people who are paid to support them or even family who don’t know how to best support them.  This is a heartbreaking topic to talk about but it is something we need to start talking about because we are in disability pride month and we are still talking about the basics, of disability rights, the basics being, the right to privacy, the right to work, the right to relationships, and the right to freedom of movement, and the right to freedom of expression and the ability to socialize without judgment, but to have advice on healthy and unhealthy relationships. As well as the ability to feel safe in their own home, which could look like living in the family home, living with others in a “normal” share house, or living in disability services accommodation, such