Why does the public think inter-abled relationships are strange

There is a couple I have followed for years, on several social media sites.  Now married, they met in college and bonded over shared interests, as many do, and started dating.  Eventually they moved in together and started planning for their future life as a married couple.  Now, in addition to having personal interests in common, they have shared goals and dreams.

None of this is controversial, right?  A typical couple going through the typical motions of merging their lives.

Now, what if I told you that the husband is – gasp! – disabled and in a wheelchair indefinitely, and the wife is – gasp! – his caregiver?  It is at this point the non-initiated (to the world of special needs many of us live in) will have all sorts of questions:

Why doesn’t she find someone else to couple with, someone without complex needs? Doesn’t he feel guilty, for keeping her in a relationship as his nurse?  How does it even work for them to have both a medical and intimate relationship?  It’s so weird, the whole thing. 

To read the comments on this adorable couple’s web page is to have your stomach turned.  How can people be so cruel, to put this man down simply because he cannot walk or dress himself?  He is intelligent, very funny, caring, conscientious and loving to his wife.  The comments for the wife are often worse: she ought to leave her “invalid” husband; he’s a burden to her.  And of course, she can “do better” because she is an attractive woman.

There are myriad assumptions represented by these questions.  To start, that love for a person is based on either their physical appearance or physical ability.  This is wrong for many reasons, and a thoughtful person should instantly reject the idea.  Really, do we stop loving someone when they become ill, old, weak, or otherwise less physically appealing? Nonsense. 

Another opinion lurking within these negative comments is that a romantic partnership survives best when both parties are self-sufficient.  But, if both partners are self-sufficient, why do they want to be in a relationship anyway?  And do the commentators believe that we are all so selfish as to refuse to aid those we love?  If that’s true, we are all better off being alone.

The last insidious assumption being made by anonymous commentators is that the wife is somehow obligated to provide care for her husband.  However, them being married shows her commitment to him regardless of his care needs.  He respects his wife so much to say that they can hire a carer if she’d prefer. But she desires to care for him herself.  They are both acting in honesty toward each other. 

To those of us who love someone with complex needs, the objections to “mixed ability” couples are laughable, but also insensitive and maybe even loathe.  Our desire for any of our loved ones is the same; for them to find peace with themselves/their condition, and to find others who love and accept them for who they are.  There ought to be nothing controversial about that

It’s a New Year, and as we look forward with hope to a better year ahead, it’s a good time to remind ourselves of ways that we can be more inclusive.  So, whether you work or volunteer at, or your child or young person attends, school, clubs, church, or something else, here are 10 things to remember and pass on:

1. Be ready, do an accessibility audit

Don’t just wait for a child or young person with additional needs to arrive before you do something; plan and be prepared.  The first step should be to do an accessibility audit of the activity, event or programme that you help to run.  Is there a website, or some publicity material; is this accessible for someone with additional needs?  Is the venue accessible, can children and young people with additional needs easily get in, move around, access the facilities?  Are there any hazards that need to be addressed?  Is it too cluttered and overwhelming?

What about the programme or activity itself?  Is it offering options for children and young people with additional needs?  If there is an activity that is likely to provide a trigger point for some additional needs, e.g. something that is loud, are there measures in place to help support children and young people who might struggle, e.g. ear defenders or a quiet ‘safe space’?  Thing about the children and young people who might come; will the activity be accessible for them; can you adapt it so that it is?

2. Smile, and mean it!

We all know that first impressions mean a lot, and the first impression that a child or young person and their family can often receive on arrival is of someone looking panicky, disappointed, or appearing downright hostile that a child or young person with additional needs has come.  People’s reactions become visible in their facial expression, and those looks can hurt.

So, when you see a child or young person with additional needs arriving, think of the positive ways that including them will be great for everyone; it will help if you’ve already anticipated their arrival and planned for it (see 1. above). And smile, really meaning it; let your face show a welcome, not a worry.

3. Greet children and young people by name

As they arrive with you, say hello to children and young people with additional needs.  Call them by their name so that they know that you remember them and care enough to know their name.  Ask them how they are doing, take an interest in them, tell them a little about the things that are going to happen in the session and explore with them, and if appropriate their family, what support they might need.  Get to know them and their family, learn from their experience and knowledge.  Maybe you could create a ‘social story’, a sheet that uses photo’s, symbols and words to explain a bit about the club or event. You can find out more about social stories here: https://reachoutasc.com/resources/downloadable-resources/

4. Have someone they can ask for help

Once a child or young person with additional needs has arrived, make sure there is someone there who is looking out for them, checking that they are OK and helping them if they need it.  This could be a one-to-one helper if that is what is needed, or someone who is able to support several children and young people if that is appropriate.  Other young people can sometimes be great at helping their peers, being ‘buddies’ with suitable supervision.

5. Think sensory!

We all learn and engage with activities in different ways, but our senses play a fundamental and vital role in how we explore and understand things.  Are the activities we are providing accessing as many senses as possible?  If you are telling a story, for example, are you just reading the story and expecting the children and young people to listen, or are you creatively employing all of their senses, giving them things to see, touch, smell, and do?  The more sensory and interactive the activity is, the more children and young people will be equipped to engage successfully with it.

6. Have ‘activity breaks’

 If there is a part of the programme coming up where the children and young people will be needing to really focus and concentrate, help them to prepare for this by giving them an ‘activity break’ first to help to regulate their systems.  This could be some exercises, some stretching, maybe a short walk, or if this isn’t possible then giving them some theraputty to squeeze for example.  These ‘activity breaks’ can help wake up a child’s system that is under-responsive, and calm down a child’s system that is over-responsive.

7. Communicate clearly

One of the most common triggers that can cause difficulties for a child or young person with additional needs is when they don’t know what is happening now or next.  A simple visual timetable, using words, photos and symbols as appropriate for each child or young person that needs it, can give reassurance and understanding.  Alongside a sequence of each activity in the programme, a photo of the child, attached to a strip of Velcro, that they can move along step by step as the programme continues, can give them confidence in what is happening now, what is expected of them, and what is coming next.  The link to the ReachoutASC site given earlier provides some example downloadable visuals, and you can also find some visual timetables here: https://additionalneedsalliance.org.uk/information/ (click on ‘Resources’ then ‘Visual Timetables’)

8. Use what they enjoy doing to help them learn

Every child has things that they really enjoy doing, so why not use these to help them to learn?  Maybe it’s Lego, so get them constructing something that fits in with the topic or story.  Maybe it’s Minecraft, have them build something that represents the theme or activity.  Perhaps they like drawing, or craft… whatever it is, find out what they enjoy doing and use it to help them to learn.  A great way to find out what they enjoy is to get them (or their families) to fill in a one-page-profile sheet; you can find out more about them, and download loads of different styles, here: http://www.sheffkids.co.uk/adultssite/pages/onepageprofilestemplates.html

9. Feedback to families

At the end of the session there is a valuable moment that we shouldn’t overlook; a time to feedback to families about how their child or young person has got on during the session.  What have they enjoyed, what did they struggle with, are they happy or sad?  It is important to keep this feedback upbeat, we’ve all been there, filled with dread when a stressed looking teacher has been striding across the playground towards us.  So, focus on the positives while also seeking ideas to help with areas of struggle. If there isn’t time to have conversations with every family, maybe design a simple feedback sheet that can be filled in as you go through the session.

10. Don’t do this on your own

Finally, if everything I’ve mentioned in this article seems a bit overwhelming, you don’t have to do this on your own.  There are loads of online groups out there that you can tap into for ideas, resources, support and more.  You could try the Additional Needs Alliance, for example, a collective of nearly 3,000 children’s and youth workers, teachers, practitioners, parents, and other family members, who all journey together to make a positive difference for children and young people with additional needs.  You can find the Additional Needs Alliance Facebook group here:  https://www.facebook.com/groups/additionalneedsalliance (you will have to answer a couple of simple admin questions to join).

I hope these 10 ideas will help you, or the places your child engages with, be more inclusive in this new year!  Do remember to share them with anyone that would find them helpful.

Happy New Year!

Mark