The Ends of the Driveways

While I was studying, one of my main income sources was being a support worker for a young boy with autism. He is twelve now, he loves his iPad, he asks for cuddles when he is upset, and he enjoys tickling around his neck. His heart is big considering his different set of emotional abilities than our understanding of the standardized norm, and he tries as hard as he can to enjoy what is in front of him.

This boy lives with his family in the back house of a long driveway at the end of a lengthy street. You cannot see the house from the road. You would have no way of knowing that he lives there, surrounded by a family that is also coping with a number of differently abled children; it is a tough house to be in. The parents, not the wealthiest, are contending not only with the pressure to provide for their children but with the emotional, mental, societal, and physical pressures that come with raising children who have entirely different needs than the usual parenting books offer advice on.

As the children grow, there are new sets of issues that present themselves. Just when one of these parents feel relatively stable in their household (still coping with the challenges but being able to handle them with some sense of security), hormonal changes and school pressures might break the mould and present new and mighty challenges. It is an endless cycle of renewed parenting skills, and it is an endless cycle of siblings attempting to build and maintain relationships with each other despite incredibly different mental and emotional abilities.

This is simply a snapshot of a family, one amongst many in our communities. Because of the social disregard for people that are differently abled, there is a tendency for those people to be shut away out of sight; down the long driveways at the ends of streets, if you will.

What I have learnt by working in this sector is that there are far more families with differently abled children than you might realise. In a study conducted in New Zealand in 2013, 24% of the full population identified as having a disability, with 26% of the Maori population identifying the same.[1] That is roughly a quarter of the population of the country that have the potential to be labelled, ignored, and underappreciated.

How can we include those with different abilities? How can we care for those who have children with different abilities? First we need to change our social perceptions of what it means to be a true community. Secondly, we must begin to support those families in our communities that are struggling under the radar. That is how we build an accepting, gracious, strength-based community.

Differently abled people can be joyous dynamite when allowed freedom to move and be accepted. They are not simply here for our inspiration,[2] but have the potential to believe that they are here to live life and live it the best they can. They are emotional, like us. They are kind, like us. They are creative and tender, but they can have their off-days (is this starting to sound familiar?). They work hard, like us. They enjoy their favourite things. What is separating us?

Us.

Them.

We are not together.

The distinction between us and them is a community disaster. It is exclusive to some and excluding to others. The disability label creates tension between what is possible to comfortably interact with and what is not. We are frightened of the unpredictability of disability. It is unlike what we know to be normal, and so we do not know how to socialize with it.

We do not have to understand them because they are too complicated or troublesome. They do not need or want the same things that we want, and it is too difficult to learn their patterns of lifestyles and the strengths they can give a community. They are too demanding, and we do not have the patience, energy, or skillset to be able to handle them. Under the pretence of ‘not wanting to interfere’, we decline the opportunity to acknowledge their needs and to accept the friendship that they may offer.

The us and them terminology must be swept away, so we can begin to grow with the people around us and learn to be a community. To do this we need to reject socially established guidelines of what is normal and what is not. Inclusivity is the first step to community. It is the reprogramming into a together mentality that will soften our hearts and teach us to reach out to our neighbours at the end of the driveways at the end of the roads.[3]

But how would you find those of us who are differently abled?

Chances are, your church, community hub, library, supermarket, and shopping centre, swimming pools, amusement parks (need I continue?) are all visited by the differently abled people in our community. Say hello. Include them in your vision and in your day. Make time for them, even if it just a wave. Get into conversation. Ask questions. Show interest. Be open to conversation and be open to perhaps being rejected if it is not the right time. Show that you care by stepping forward, and show you care by stepping away. The one thing that shouldn’t happen is the averting of eyes and the ignorant dismissal of their existence.

More often than not, you would actually know a family that has a child or adult with different abilities. Be there for them. Support them. Bring a meal around with permission. Be a listening ear for parents or carers. Give tokens of appreciation or kindness. Get involved with their lives or let them be a part of yours somehow! Ask those families what they need and offer assistance. Help them with a task or have an afternoon tea with them. It is the same friendship that you would offer your friends that you would extend to these families, perhaps with a little more thought and giving plenty of notice of when you may be able to give your time. These families need cherishing and inclusion. Be a part of that!

Finally, a side note. Support the support workers that you know. Pay special attention to those who are working in the community of differently abled people already, and often they might need a hug, a listening ear, or perhaps time to sit, process, and learn to understand. During my time as a support worker, there were often times I needed to reflect, forgive, and pray; this is the same with many other community working occupations and vocations. Support those people in your life that are dwelling amongst the chaos, if only for a portion of their time. When support workers are cared for, they can care for those who they are supporting with more vitality and wisdom.

Find the people at the ends of the driveways at the ends of the roads.

Love them as valued parts of the community that have so much to offer.

Create, and be, together.

• Trinette Taylor

[1] See Statistics New Zealand’s “Key Findings from the 2013 New Zealand Disability Survey”, accessible by visiting http://archive.stats.govt.nz/browse_for_stats/health/disabilities/DisabilitySurvey_HOTP2013.aspx.

[2] For an exposition of this, see Stella Young’s TED Talk “I’m Not Your Inspiration, Thank You Very Much”, discussing the phenomenon of turning those who are differently abled into ‘inspiration porn’.

[3] For a beautiful depiction of this, search SBSK (Special Books for Special Kids) on Facebook. There are countless videos of a former special education teacher interviewing those with neurodiversity and letting their voices be heard, promoting love and acceptance.