The term disability is often associated to the hearing or visually impaired, wheelchairs, or even the elderly. They're the classic examples of what we consider disability to be, essentially becoming symbols to what is a far greater concept. According to the World Health Organisation (WHO), disability is an umbrella term that captures a more complex phenomenon, reflecting the interaction between features of a person's body and features of the society in which he or she lives.
The National Disability Rights Policy has a broader definition, describing disability as the loss or elimination of opportunities to take part in the life of the community, equitably with others that is encountered by persons having physical, sensory, psychological, developmental, learning, neurological or other impairments, which may be permanent, temporary or episodic in nature, thereby causing activity limitations and participation restriction with the mainstream society.
Whichever way you look at it, the topic of disability is extensive.
If you're the guardian for someone with a disability and new to the role, you'll find info that's more specific to your individual needs. And, while it's not possible to fully cover the subject entirely, there are some topics that do generally apply:
Use your words and consider your tone
Speak to people with a disability as you would anyone else. There's no need to raise your voice, or slow your speech unnecessarily. If communication is impacted by their disability, be flexible find out what works for them. With the historically negative language surrounding disability, it's also important to consider your word choice, for example: you say a person with a hearing impairment and not deaf and dumb, say person with a physical disability instead of crippled or invalid. Similarly, don't imply that a person with a disability is superhuman, or special.
Take it slow
There's a lot to learn, so be prepared to be frustrated and give yourself time to learn. By taking things slowly and being kind to yourself when something doesn't quite work out, you'll find it easier to transition.
Keep an open mind
As with all new experiences, you have to be open to the newness. Try to maintain a sense of curiosity and questioning it'll allow you to try a new approach, reframe problems when they appear and allow for creative problem-solving. You'll also feel less limited by your situation.
Finding the finances
The financial implications of taking care of someone with a disability can be varied. While you would ideally be covered for disability insurance especially if you're the main income-earner, there are a few options that might be relevant if you're caring for a loved one.
The South African government provides a disability grant, mainly to lower income individuals. It's not a lifetime payment, but there is an option for a longer term benefit. You can find more information on disability grants here.
There's also a tax benefit for paying qualifying out-of-pocket medical expenses for a spouse or child but only if they also have a disability. There are a few limitations to this. Details are available via the SARS website.
Don't be afraid to ask for help
Find a support group, and talk to people in a similar situation. Establishing a network can help in keeping up-to-date useful information, with emotional support, and could even serve as a resource during an emergency. Depending on the nature of the disability, you may want to also consider equipment that could assist (such as hearing aids, computer software, orthotic devices).
When you're spending a lot of time looking after someone else, it can be hard to take time for yourself. It's important for their health, and your own, that you find time to stay fit and relaxed. Remember to be kind to yourself, and find a sense of purpose in an activity, hobby, or even a support group.