Being in a hospital context for four weeks post surgery, I was very used to people and other patients knowing about my condition and why. Also, I was always around people who were used to talking to people who had experienced trauma, or were in that situation themselves. There was no awkardness of conversation in the hospital. But a bit of an adjustment I’ve had to make is helping people start conversations with me outside of the hospital walls and outside of close family and friends. I need to get better at being gracious with others when they are trying their best to talk and to show that they care for me. This became really apparent the third Sunday I went to church. The previous two Sundays, conversations flowed and people around me were at ease. The third Sunday though was different. Either conversations never began because every sentence was met with awkward silence or I had to work at being really gracious (which is actually very good for me!). But coming out of church that Sunday and wondering whether this was what the next month was going to be like as the new semester begins, I thought I might write a post about what is helpful and not helpful to say, so that I can help you if you do know me personally or know others now or in the future who are in a similar situation. So here are my top five tips for starting a conversation with someone with a disability, and they are not ranked in any order, so please don’t think that number one is more important than number nine. So here they are:
Tip One: If you don’t know what to say and you want to say something, then actually say that you don’t know what to say. I know that there is nothing about my ‘new normal’ that is easy. I also know that if this is the first time you are seeing me, then my walking stick and very slow walking is the elephant in the room. I will help you navigate through that conversation.
One cause of awkard conversations is that people think that they ought to say something. I would like to say, if this is you or you have felt this way in the past, you really don’t need to say something about what has happened to me. What happened does not define who I am, so please feel free to talk about other things. This is actually tip two.
Tip Two: Please feel free to talk about other things. It is good for me not to be talking about the past four to six weeks. Please help me to come out of my small world. Nearly every waking moment is spent thinking about and planning my next step or how I can get from a to b; talking about other things will help me not to become self-centred and self-absorbed. If I begin a conversation asking how you or your family are going, I am genuinely desiring to know how you are going. So please feel free to say; you don’t need to bring the conversation around to me.
Tip Three: There are a couple of conversation starters that are really unhelpful. I understand that people begin this way because they want to show they care or don’t know what to say, and I really do not wish to undermine people’s intent by writing what I am just about to say. But you may notice that my response is very polite with a smile that does not reach my eyes. I am sorry if my response does not always match your sincerity, so to help us all, I though I would be bold and just say that these particular conversation starters are ‘do nots’.
‘Are you feeling better?’ The problem with this question is that I didn’t feel ill. In fact, I felt like death warmed up for a month before all this happened. I had a bad cold that I couldn’t shake off and I was trying to finish a very chaotic semester. I felt sick then, I didn’t feel sick when I was admitted into hospital. I do, however, have significant health problems now post-surgery. For the majority of the time, I feel lousy and drained. This isn’t going to suddenly change and I’m not going to wake up one day feeling better. The health issues I now tackle on a daily basis are long term problems. My focus is learning how to manage these health issues in the midst of normal life. Asking me if I am feeling better is counter-productive.
‘You’re Looking Good’ I know this phrase is meant to be encouraging, but it actually works the opposite. Good compared to what? Why not say what you actually mean, which might be something like, ‘I never expected to see you so mobile, your rehab must be going well’. Saying what you actually mean gives me space to respond beyond ‘great, thanks!’ You are making a true observation and actually encouraging me in my rehabs efforts. Also, I am exhausted most of the time both mentally and physically. I also have vertigo, which doesn’t make life easy, so looking good is far from how I feel most of the time. So I’ll take it as a compliment, but inside my head, I really do not believe you.
‘Did You Have An Accident?’ Or ‘What Happened to You?’ This is the most common question I get asked by people I am meeting for the first time. So if you know me personally or are reading this blog, then it is unlikely that you will ask me this question. But you may ask someone else this question who you meet for the first time and who has a walking aid. This question asked of someone who has no visible bumps and scratches, does not have a bandage or a cast on, is tactless. How do you know that this is not a permanent condition or how long they have needed to use a walking aid, irrespective of their age? If you have just met them, you do not know. Responding to this statement can be quite embarrassing for both people in the conversation and the ensuing conversation may dredge up memories from the past that the person is wishing to leave in the past. Please remember that people with disabilities are not defined by their disability or by the trauma that led to their condition, if indeed there was a traumatic event. Why not start the conversation another way and then maybe when the person knows you, then they might share the information you wanted to know with you. Also, the danger, as said above, is that people who have suffered trauma resulting in a disability might be stuck in their world that has shrunk to the size of their traumatic event or their disability. By asking these two questions, you are opening yourself up to hearing a tirade of words. You may not wish to hear the explanation and you may not have the capacity to cope with the response. So, if you can, please avoid opening a conversation with a stranger this way – even at church!
Having said this, and just as an aside, I am publishing these posts two weeks after the events they describe. At this stage, I am emerging from the post surgery phase and focusing on how I do life within my new normal, my rehab, and getting back into work. I am really keen to leave the events of five to six weeks ago behind me. I really do not want to keep repeating what happened. I know at times this will be inevitable and I hope that I can respond graciously and with sincerity. However, I do wish to focus on the present and the future. I need your help to do this. So please forgive me if I have seemed dismissive in my response or have redirected you to this blog. Writing the blog actually frees me from having to revisit the past and enables me to focus on today and tomorrow.
Tip Four: If you are genuinely wishing to know how I am going, here are some helpful ways to ask. Using the Aussie greeting ‘How are you going?’ gives me the freedom to respond with how I really am going. Also, there is no assumption in the question. At 3-6 weeks post surgery, pain might still be a problem and that pain might be hindering progress in rehab. Asking how pain levels are going is helpful. Though, you might also be surprised by the response in a good way! Knowing that I am still in intensive rehab, whether as an inpatient or as an outpatient, asking how the rehab work is going is saying to me that you are interested in my progress. You could also ask whether I have made any progress this past week. This is a positive way of asking about my recovery. Another question you may like to ask is how my energy levels are going. I will write about this in a later post, but exhaustion is a big problem. There are many other suggestions I could make here, but I think you get the picture.
Tip Five: Please do not let the conversation begin or drop into awkward silence. This means I will feel like I need to work at the conversation and I find this very draining. I don’t have much mental capacity beyond thinking about how I go about doing life in the next thirty minutes or hour. I’m continuously having to plan. I will let conversations drop sometimes if I have no more mental energy, but this does not mean that I don’t want to talk to you, it just means that I need your help. If the awkward silence though is because you don’t know what to say, then just pick anything to talk about. You don’t need to talk about me and I don’t need you to talk about me. This goes back to tips one and two above. However, awkward silence could come about because you are embarrassed to be confronted with a person with a disability. I’ve only had this happen once with a teenager who didn’t have the maturity to deal with what she saw and found my walking stick awkward. If you are a parent in this situation, you are modelling to your teenager how to interact. In this instance, the parent was a father and he too made his embarrassment known quite loudly by his shuffling feet that were suddenly very, very interesting. If you are someone who gets a bit embarrassed when speaking to a person with a disability, whether it be minor or severe, then please do some work speaking to someone else to figure out why. In the meantime, first, give yourself a break. Second, be honest. Actually say to the person that you are not sure how to start this conversation. Or, if they have already started the conversation, why not try your best to reflect back to them what they have said. At least this way they know you have heard them. Honesty and sincerity is better than leaving someone isolated and equally humiliated.
Something else worth saying, which is not a tip, is that I won’t judge you for being honest and for never asking me about my new normal. This issue is much bigger than a paragraph, so I will publish a post about this later, but it needs saying. As said above, I don’t need you to talk about me and I won’t be offended if you never mention the events of the last six weeks to me. If I don’t know you well, then I don’t know what is going on for you and what experiences in your life have shaped you to be the person you are today. I know that some people do not have the emotional capacity to engage in the messiness of other people’s lives because they are overwhelmed by the messiness of their own life. This is not being self-centred; this is being self aware about what may tip you over a very scary edge. If this is you, or has been you, or is you in the future, then feel free and unapologetic about talking about the small things, the light things, the trivial things, even if there is an elephant in the room. Your self care is just as important as caring for others.