Shakespeare may have been on to something when he said that "a rose by any other name would smell as sweet", however he clearly didn't have any experience having a disability in the 21st century. I can assure you that names and titles in the here and now, matter, and they matter a great deal. Ableism is alive and well in our society, and it quite often starts with a title.
For the majority of disabled Australians who require a person in a paid position to help them live their lives, whether it's to help them do personal tasks such as taking a shower, household tasks such as cleaning and laundry, or social tasks such as accompanying them on outings in the community; there are two words used to describe that person - and that is "Support Worker". With the introduction of the National Disability Insurance Scheme (NDIS) in Australia, support workers are becoming more common in our lives, both for disabled people, and the rest of the population. Tinder style apps have grown to allow people to 'hook up' with a support worker of their choice, and businesses are flourishing providing this type of support. The mere mention of the word 'disability' in a post on Facebook will have your feed inundated with advertisements about support workers...
There is a great deal of rhetoric around the concept of the support worker, and while that is a far larger blog for another day, I will quickly cover it now for those new to this adventure. Support workers are a tool that help disabled people live their lives, however far too often, they are seen as saviors that disabled people need to live their lives. The "support" provided is seen as "saving" the disabled person, until the two words become synonymous almost. This rhetoric is problematic, as it gives ownership of our disabled lives to others, instead of retaining it for ourselves. Straight away, we are no longer seen as 'in charge', but simply 'along for the ride'.
Have you met me? I'm not along for anyone else's ride!
When I hire a 'support worker', the first thing I look for is how they speak about the job. If they speak to "helping you live your best life", or anything along the lines of coming in to 'fix something', then I usually send their resume to the bin. I also send their resume to the bin if they constantly speak of themselves, and what they hope to accomplish, rather than asking me what I need out of our relationship. It can be a fine line, however it is a hard line - this is about me, not you. And I don't need someone to save me - I need someone to do the dishes.
As a society, we have put support workers up on a pedestal, seeing them as "saviours", and it is to the detriment of disabled people. In the esteem of others, the higher our support workers go, the further down we go. This is why I no longer have "support workers". I have "assistants".
The reasoning was quite simple at first. When I go out, if I introduce someone as my support worker, then the person we are talking to will usually start speaking to my assistant, instead of myself, even though my assistant is only there to push my wheelchair and has nothing, personally or professionally, to do with the situation at hand. However, if I introduce my support as my assistant, then I am given autonomy and respect, the conversation continues to be directed toward me, and my assistant is left alone to do their job.
We do not need "support workers" to "save us". We do sometimes need assistants to assist us however. Such as seen here in the picture below where I needed my assistants to help my family do some Ikea shopping lol...
I am currently studying Social Work, and I am surrounded by people who want to 'save others' from themselves. The whole concept of being "saved" carries with it a humiliation that is hard to ignore if you happen to be someone who needs the help being offered. We need to change the rhetoric from one of "saviour" to one of "assistance". No one needs to be "saved" by another. We all need to give each other a helping hand, yes, but again for those in the back - no one needs to be "saved" by another. If you have had these thoughts about yourself and the work you do, please stop patronising your clients this way. People have helped you in life - your parents, your siblings, your grandparents, your teachers. None of these people "saved" you - they simply "helped" you out, as required. The disabled (or other) people you are helping either didn't have these ordinary people in their lives, or they need more than these people can provide, however this doesn't mean they need "saving". It simply means that society needs to pick up where families and other regular helpers have left off.
(For the record, my children don't have support workers either. They have nannies who are trained to deal with children with disabilities. Same job, different name. Different rhetoric. And hopefully with that, my children are growing up, not seeing themselves as "disabled" and requiring another to "save them", but as different, and simply requiring some extra assistance that Mum and Dad can't physically provide.)
Support. Assistance. Really, I can understand why most people simply aren't going to see the difference in these two words, and can't, or won't, comprehend why I think it's such a big deal. However it is a big deal, and you would see that if you ever travelled out with me and noticed the difference in how I am treated when using the different terms. While ensuring that the disabled community is receiving the assistance it requires, we need to be careful not to undermine it all by harmful rhetoric and ableism.
After all, when I accomplish something, I want the world to know it was MY accomplishment, and not that of someone else. Do you not want the same thing for yourself???