What a busy day and every moment was great! It started with the weekly visit from my support worker. She's exceptional. Usually when I have to depend on people to make my phone calls and organise things they do so reluctantly because they know it means endless interruptions with me reminding them what to say on my behalf. Not so with my support worker who instinctively seems to know exactly what's needed. The best thing about people like her is not just the fact she undertakes necessary tasks for me but also that she listens and shows genuine care and interest. It's often very difficult if not impossible for families of disabled people to fully appreciate needs and particularly the needs of those with acquired problems. When a family member previously able to do things changes and becomes dependent, especially those with invisible problems it's difficult for families to recognise and accept changes and my family are no exception. I'd always pandered their needs and took pleasure cooking, cleaning up after them, making small talk and all the other things a mother and grandmother does. But things have changed, I can't see the clutter which is now potentally dangerous for me, I don't see the smudges and spills, can't cook without risk of burning me and the food and they completely forget to include me in group chat. It's not deliberate oversight on their part or neglect its a case of not seeing the differences in me and not wanting to accept mum now has limitations. its a very natural thing with families.
When someone develops a disability the entire family needs help on awareness, acceptance and adjustments. Sadly there's very little help and disability education available for families out there. .
The afternoon was spent in a secondary school speaking to 4th year students. Selecting volunteers to try out ear defenders to muffle sound and a blindfold then getting them to walk round with only a stick to help is always a good way of breaking the ice and giving a small taste of what it feels like. As usual when we first entered the class the teachers assumed it would be the guide speaking and not me, after all they don't imagine a deafblind person will be giving the talk, it's the same old problem that occurs everywhere I go, it irritates me at times but I've learned not to get offended. Glad to say by the time the lesson was over the teachers themselves had learned a lesson in not making assumptions and not overlooking someone because they are unsure of what approach to use.
Usually I ask the pupils 'if they saw me with the stick and glasses outside trying to cross a road would they help me?' usually I get a resounding “YES,” today however because the pupils were shy only one hand ventured up. I explained about sensory loss affecting balance in my case I can stagger around like a drunk on a Friday night, I remove the glasses, put down the stick and demonstrate my walk then ask again if they saw me without the stick and glasses would they help. This time they weren't shy in yelling “NO.” It's another way of showing how wrong assumptions can be. The dark glasses do protect me from light but also serve as a visual for others and the stick applies in much the same way.
Its a tremendous feeling when you know people have listened and taken on board what you've said and even more so when you know they've actually enjoyed listening. If this can enlighten just one person and make just one person understand disabled people are no different from them. Not just dual sensory impaired people but all disabled people then I have done something good and worthy.
Following days like today I can always sleep with a lot more ease. Not only was my vision stable and not causing pain but I did what I set out to do, enlighten people and feel I'd contributed to the world in some small way. What a wonderful feeling that is...
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