It costs nothing to be caring and to care for others. Nothing.
Caring is compassion and love and understanding.
Support is something you offer to other people and support is sometimes paid work.
Support workers or people offering support are doing a job, but sometimes they are not always caring.
Sometimes people can stand up and speak about what they want. Sometimes they can’t.
Sometimes people are embarrassed or shy to ask for help. Sometimes they don’t know what they need help with.
But if they don’t stand up or speak, how can they receive support and assistance?
It’s a double edged sword.
Schools, TAFE, colleges and universities offer different kinds of support. Sometimes they offer nothing at all.
The most painful experience I had was last year during my honours year at university.
During my undergrad degree, for my lectures and classes, I had a note taker who would send me notes after the classes. But I never knew who they are and no one knew I was getting support.
I had other support too, and while it’s not the best it did help ease off some of the pressure.
But with honours last year, it is different than undergrad, so I didn’t know what support I needed because it was not the usual lectures and tutorials.
Honours has seminar classes, not lectures and they did not offer note taking support here.
Before honours started, I had a meeting with the university disability services to see what support I can get.
They were so rude, arrogant and made me feel embarrassed and belittled to ask for help.
They were not willing to pay for live captioning or other services like transcriptions of my interviews as part of my honours research requirement.
Mind you I don’t even require a sign language interpreter for any of my classes at university, so I wasn’t costing them anything.
“Everyone does it themselves”. I was told. “so you should do it yourself too”.
I can’t hear audio and record/ transcribe so how could I do it myself??
This was the first time I felt like a burden and strongly embarrassed by my hearing loss at university.
They agreed on hiring a note taker to come to my honours seminars, which they don’t usually do.
“Ok” I thought. “Maybe I won’t miss anything in the most important year of my degree.”
Here are the things that went wrong:
1. They hired someone NOT suitable for the job. Note takers are usually students in the class who write notes, which is then emailed to all the students who need them.
The person they hired for my honours classes was an “academic”, not a student or at least someone that is CARING. They hired someone who I later realised was coming from a higher “position” than my classmates and I.
2. He did take notes down for me, but he failed to do his job which is to be my “ears”.
In fact, he completely ignored me and isolated me. During a class activity I missed the instructions and didn’t know what to do. I asked him to explain what they said and he was not helpful at all. It was frustrating and isolating not knowing what is happening.
3. I was clearly visible but my voice and independency was invisible. The classes were smaller and he sat next to me. Unlike the previous years where I did not know who the note taker was and they didn’t know me, the class didn’t know anything either. But here, this older man would come and sit next to me and it like there was a sign pointing me and I was always in the spotlight. I did not feel like an equal in my class. I felt awkward, anxious and embarrassed in all my classes. Especially when I spoke up or when my “note-taker” spoke up to offer his “academic inputs”.
4. To make matters worse, the person they hired was always speaking up and was engaging in the class more than I was! He even went out for “drinks” with my class instead of me! I know I have my reasons for not going, but the point is that it created an isolated bubble for me and I couldn’t interact or engage my classmates freely, but he was able to!
It was hard at first but it got worse. The anxiousness, vulnerability and constant spotlight while feeling invisible and without a voice became infuriating.
It did not help that I was the only hijabi and “visible” Muslim in the class, and my minority multiplied my vulnerability.
I know that I am very confident, independent and have strong self awareness and acceptance. I am proud of who I am.
But this time last year was one of my most weakest, vulnerable and painful experiences of my life.
And it took me a while to realise what was happening.
It affected me so much that it affected my work and I produced the worst assignments I’ve ever done at university.
It did not hit me, until one day I burst into tears in my supervisor’s office. I was anxious, vulnerable and could not stop the tears from flowing.
My supervisor is an amazing and wonderful woman. She’s an expert in the field of disability and she somehow knew this was going to happen. She knew the impact having a note taker next to me would have, even when I didn’t believe her at first.
She didn’t want me to accept their support at the start.
But I did not want to “rock the boat”, even when it has gotten this bad.
On one hand, I wanted to stand up for myself and speak up about what’s happening and why it’s bothering me so much. On the other hand, why do I have to? Why bother?
I fight everyday.
I fight everyday to have my voice heard, to try and keep up in a noisy world and to be involved in my family and community.
I fight every day for small and simple things, so how can I fight the big battles when they come?
How can I fight when I am feeling vulnerable, inferior and exposed?
It’s a double edged sword.
My supervisor did not let it go and spoke up for me. She emailed the disability services at university and even got the head of the school involved. She knew the disability services has gone downhill. She did not keep quiet.
I don’t know if the services even apologised, but they agreed to pay for interpreting and transcribing assistance which wasn’t cheap and this came handy during the research part of my honours. They sucked it up and gave me what I wanted at the end.
But I learnt a very important lesson.
My supervisor fought for me.
She fought for me and for once I didn’t have to.
She fought for me because she cared.
As for the note taker, I can’t really blame him. I know that he probably was not aware of his actions and how it was affecting me, but he was doing a job- offering support- but was NOT caring.
This is my experience.
At the highest level of education, at one of the most prestige universities in Australia, with the funding and power and resources to offer support, but was not caring.
My other deaf and hard of hearing friends, in their varying level of support they receive and in other educational institutions and other places they want to participate in, they face more difficult barriers.
I know a wonderful mother who is hearing impaired and went to college to pursue kinesiology, something she is passionate about. But that particular college did not want her to finish the course or offer her ANY form of support, even when she was paying for it. She did not listen to them, and pushed forward to finish, even without any assistance and support.
Another beautiful friend was telling me today how she is having a rough day because her SUPPORT WORKER does not think she can do the pathology course at TAFE. My friend has the belief and confidence to do it, but the person who is supposed be offering her support is telling her it will be too difficult for her! My friend is upset, frustrated and is actually considering leaving because she cannot cope with the stress and lack of support.
It is people, their attitudes and actions which creates a barrier for us. NOT our disability or impairment.
We all want to strive and do the same as other people. But we are not given the support to do so. Because not everyone cares.
Care and understanding is free, support is not.