My journey with Alfie.

As I set out with Alfie each “Oh, who’s your friend” I received was cheerfully greeted with an explanation of who Alfie was and what his needs are.

By day two of travelling I’d grown tired of repeating it all. BY DAY TWO.

Alfie the Elf and Joanna Grace sat waiting for a train.
By day three I didn’t have the heart to say it anymore. I was cowed by the “Oh, who’s your friend” I didn’t want to have to repeat the cheerful litany of what he needed and what was missing.

I do not enjoy telling people they are not getting things right. But it needs to be done.

Alfie’s experience is not new to me. I have family members and friends who are wheelchair users and who would benefit from there being more Changing Places toilets around. But even for me, as someone who is aware of the inaccessibility of our world it brought it home to me.

 

This slideshow requires JavaScript.

As Alfie and I worked at two fantastic events, each pushing towards a more inclusive society (Flo Longhorn’s No Ticks No Boxes and Richard Hirstwood’s Social, Emotional and Mental Health) I was reminded of the powerful words of one of the speakers from last week’s Raising the Bar event to launch the Core and Essential Service Standards for Supporting People with Profound and Multiple Learning Disabilities a document focused on effecting a positive change to the lives of complexly disabled people nationally, perhaps even internationally. The speaker was Rachel Wright, and two things she said stand clear in my coffee addled sleep deprived mind:

1.  She spoke about how when she was a nurse she was not allowed to care for more than 12 hours straight. It wasn’t safe. But as a parent…

In two day’s time my travels with Alfie will be done. I, like so many professionals who support people with additional needs, will pass him back into the care of his family. When I do that I will feel a little freedom, I will feel I’ve done a little good, and then I will go and live my life. “My life” – parents, carers, do you remember when you had one of those? Does it sound like some sort of fantasy thing? I will sit on the sofa, drink wine, watch TV, I will sleep. Can you even imagine it?

2. (I hope she will forgive me for paraphrasing her words for this second point) – I do not want help. I need it. I do not want to need it, but I do. That is the reality of having a child with additional needs. But remember when you come into my home and tell me I am doing it wrong – as you MUST – remember I will feel guilty, I will feel angry, I may not respond well, but I still need to hear it. I do not give my child over to your care because I want to. I have to.

Pointing out the inaccessible nature of the places they work in to people has been tricky. To explain to a parent (as Sarah Clayton must as part of her postural care work) that the way they put their child to bed at night could, in time, kill them is far harder. But how we approach these conversations is how we facilitate change. We need to be gentle, positive, supportive, informative, and yes…we need to smile. We need to create that human connection, and no matter how justified the anger, it always builds walls. Ultimately the individuals themselves need to be at the heart of what we do. And in my day dream world it is not just the parents of those individuals and the professionals who support them who have that conversation it is everyone. Imagine if everyone who had stepped onboard my train tonight had asked about accessibility.

The changes needed are marred in politics. I meet people with no focus other than the child and making the difference to that child, and people who engage with the politics hoping to effect change that way. Overwhelmingly the people I meet on my travels want change, but everyone is flagging. It is not easy for any of us in a world of shrinking budgets and increasing needs. We are tired, we are beleaguered, some of us are grumpy and ratty and it should all be done by now, the world should be different, we should not have to slap on a happy face and explain once more ….

And if you are a parent tired of doing that, and you feel a tinge of guilt for feeling tired of advocating for your child, hear me now: DO NOT FEEL GUILTY, it is not your fault that the world is not as it ought to be, and you do not feel tired because you are not good enough, you feel tired because you are human. You are not on your own; there are lots of people out there sincerely trying to change the world. Hang on in there and allow yourself to feel your feelings. You’re doing an amazing job.

Alfie and I are nearly at the next change of trains. I’m left thinking of Rachel Wright again, as she told us how she wants everything for her son, everything possible, and that part of that everything is his independence, his independence from her. To enable him to be independent she must let him go. All parents find this tough, but most of us get to let our children go into a world that broadly understands them, one they can communicate within, one that will more or less care for their needs. What if you faced letting your child go into the care of people who may or may not understand them like you do?

I have looked after Alfie for a while. I reckon I’ve done a good job. Have I done it as well as his family would have? No way. How do you weight the balance between the very best care and independence?

It is down to us, all of us, whoever we are. When we create a world which is accessible, where difference is understood, then we allow parents to be parents again and children to be children. As the train rumbles on the recent words of another blogger, Emma Murphy, come to mind: I don’t want to be your carer, I want to be your mumAll of these tiny steps we take to a more inclusive society are steps towards that. The small bit of difference you make when you ask about accessible provision and when you answer those questions for the umpteenth time, are those tiny steps. We are getting there.

Jo Grace

Elf seagull

 

About Jo Grace – Professional

Joanna Grace is an international sensory engagement and inclusion specialist, author, trainer, TEDx speaker and founder of The Sensory Projects. Consistently rated as Outstanding by Ofsted Joanna has taught in mainstream and special school settings, connecting with pupils of all ages and abilities. Joanna has also supported adult care teams and families caring for loved ones at home. To inform her work Joanna draws on her own experience from her private and professional life as well as taking in all the information she can from the research archives. Joanna’s private life includes family members with profound disabilities and time spent as a registered foster carer for children with profound disabilities. 

Joanna’s book Sensory Stories for children and teens sells globally, her second Sensory-being for Sensory Beings came out this year to a great reception and she has a further five books due for publication within the next two years, including four children’s books.
Joanna is a big fan of social media and is always happy to connect with people via Facebook, Twitter and LinkedIn.

Jo Grace – Personal

Joanna is a mother, a divorcee, a single co-parent. She is autistic. She is consistently described as tired by friends. She lives on trains and she is missing her son. She does not have to work as she does, she chooses to, and in choosing to she misses out on seeing her little boy. She loves the people she works on behalf of more than you could know. And if she gets to be a part of making a positive change in this world she will consider her life worthwhile.

 

3 thoughts on “My journey with Alfie.

  1. AS a carepartner for my wife who is wheelchair bound for the last 7 years and living in New York City which has important “A.D.A.”i.e American’s with Disabilities act laws for equal access to all people ,I often feel if everyone lived ina wheelchair for just one week ,how different would public venues be designed (& the transport equipment needed) to help “differently abled” not “disbaled” people to live much more comfortably.
    In NYC we have 96% compliance with wheelchair ramps on each corner that’s incredible ,however the
    one area lacking are proper toilets especially as I being a man who must assist my wife in a female toilet which when seen with her in such an environment I still get stared at as if I don’t belong there or worse–!

    Liked by 1 person

    1. That must be very hard for you both to deal with. I agree, if others had to live as a full time wheelchair user who relied on another person to get them to the toilet things would start to change.

      Like

      1. I have found as a husband caring for my wife with Parkinson’s disease since the year 2000 that not only
        access issues would be better planned for those of us who are differently abled (and their helpers) but the design of transport chairs and access ramps for easier mobility would improve.
        Some decades ago I had a friend who was a famous screen writer then working on a script about a Vietnam war vet who was injured and lost his ability to walk and otherwise do for himself while liivng in a large city.
        My friend had sat himself for a week in a wheelchair while writing that filmscript ,firstly having him set in the middle of mid town traffic ,to realize what that situation entailed for a person previously abled bodied.
        It was a shock for him how hard it was to live without the normalcy of the use of his legs and normal walking.
        As for myself I am glad to help my wife as she is still at home with me in comfort as opposed to
        a nursing home perhaps adrift & scared.

        Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s