If only, oh if only

Standard

[This is for Blogging Against Disablism Day.]

I knew Adam.

I didn’t know Adam’s mother.

That’s important.

I knew Adam in terms of who he was after he’d already been created. I knew this funny, smart kid who liked to grab my hand and walk in circles with me, who fearfully tried to hide in my room every night when staff came around to tie him to his bed, who looked and sounded very non-standard, and all of these things were just part of Adam. The non-standardness no more and no less than any other part of him.

The only time I heard about Adam’s mother was through those sorts of overheard staff conversations that let you know exactly what you are to them. Through them I heard that no mother should be blamed for “giving up” a child like him, that the unusual but not unpleasant sounds he made were animalistic and unbearable to listen to, and that people like him were, in general, impossible, and should be locked up for the rest of their lives. I heard a lot of pity for his mother. I never once saw her visit — and even the most screwed-up parents usually visited their kids. She had to have at least some money because this was a private institution. But she was never there, and staff made it sound understandable that she would never want to see her child again.

I didn’t know Adam through staff eyes, and I did not know him through parental eyes either. I think this was for the best, all things considered.

And the same has been true of any disabled person I’ve known. Not all of us have been friends. Not all of us have even liked each other. There can be all sorts of negative things in between us like status and power hierarchies, stereotyping, pity, and so forth. But at the same time there’s almost always something missing that I’m glad is missing, and something there that I’m glad is there.

I have never mourned the existence of someone the first time I met them. (Or after that for that matter.)

I have never grieved that someone was not the normal person I expected and hoped for. Not even for a little bit. Not ever.

I have never “had to come to terms with” the fact that someone I knew was born different.

I have never had any urge to commiserate with anyone else over these sorts of things.

I do not look at a person and divide them artificially into the “normal” parts of them that I find tolerable and the “abnormal” parts that I find unbearable and tragic.

I do not look at my friends, compare them to other people their own age, and think how horrible it is that I don’t have the good fortune of experiencing my friends hitting all the ‘typical’ milestones for their age group, there is no sense of loss here.

These ways of thinking are just utterly and beautifully absent.

It’s right that they’re absent. It’s wrong when they’re present. I keep hearing we have to allow for the fact that it’s only natural for people (you know, real people, which I’m not) to grieve this part of our existence. How it’s just wrong, downright insensitive, to want more from people.

Want to know why I and many others I know get nervous about reading blogs by nondisabled parents of disabled people? Even many of the “positive” ones? Stuff like this (paraphrases of stuff I’ve really heard in dozens of variations for each one):

“I go into his room every night while he is sleeping. And he looks so normal. And my heart breaks wondering who he could have been if it weren’t for [insert condition here].”

“It hurts so much every time I see normal children her age. I realize how many milestones she hasn’t hit. How far behind she is. And she may never catch up…”

“Other people will grow and change, but my son will be left behind. Other people become adults, but my son will always be a child.”

“My daughter has to live in a group home because she lacks the skills necessary to live on her own.”

“They said my son would never walk, talk, or take care of himself. And now he’s done all those and more. I am so proud of him.”1

“I overflow with love and pride every time my daughter looks me in the eye, gives me a hug, or uses her words. I would not know how valuable such things are if she didn’t struggle so hard to accomplish them.”

“Life with my son is bittersweet. I love him more than life itself but I know the things he will never do and it makes me sad.”

“I am constantly having to fight to pull my daughter out of her own world and into the real world. If it weren’t for me, she would be lost.”

I could go on, but I won’t. All of these sort of comments seem to be commonplace among nondisabled parent bloggers. When I question them people tell me they can’t help their feelings. But the fact is that without certain disability prejudices, they wouldn’t feel that way. And there are right and wrong ways to write about prejudice-based feelings. The right way puts them in the context of ableism. The wrong way simply serves to reinforce ableism in readers. And for disabled readers who could actually be harmed by the prejudices behind the feelings, the wrong way can feel like the twisting of the knife.

The post I just wrote is actually from an old draft on my computer. It seems that I tried to write this in two different ways. Instead of trying to synthesize them into one post, it seems better to just post them both at once. It’s a little repetitive but I’d rather do this than lose the slightly different meanings that each one has.

Despite appearances not response to any recent discussion. Just coincidence brewing in my head for some time. Also despite appearances not poetry. Just way of handling language at the moment.

I knew you
I didn’t know your mother

I only heard about her
In gossip made by staff
The sort of words they always said
That told us who we were:
They pitied her for having a child like you
And said it was good she put you away
And anyone would do so in her place

I knew you after you were already created
And I knew you roughly the way you were

I did not wonder why you were the way you were
I did not mourn that you were not someone else
I did not have a grieving period when I got to know you
I did not compare you to other children your age and cry that you did not do the same things they did
I did not see you as a special angel or a holy innocent
I did not see you as a normal boy who was stolen and replaced by an empty shell

And that is as it should be
And that is as it should be
And that is as it should be
And that is as it should be

Nobody should experience these things when they meet someone else
Yet people stand around commiserating with each other over all of those things
I walk around on the outside
Knowing I can never be part of that
Hoping they don’t notice the knife-pain that they cause

I know I am supposed to understand
I am supposed to grant that this is all natural
I suppose I can see when the world teaches you to think a certain way
That good people will come up with horrible ideas sometimes
I know I have thought and done horrible things before

But how long do we have to be patient
While the groups of people meet with handkerchiefs in hand
And blow their noses about the existence of people like us?

How long before they too will see
Beneath their shawls of tears and pain
Lies naked bigotry?

How long before the world stops glorifying the parents’ pain
And sees it as a tragedy of prejudice
Instead of a tragedy of disability?
(If there must be tragedy

How long before we don’t have to tiptoe around
How long before we can say
This public exhibitionism of pain and suffering at our existence
Denies our full humanity

How many more disclaimers
How many more do I need to make
To show I am not evil
For pulling back the curtain on evil
Will there ever be enough
Or will this always be
That they’re victimized
By having to face the truth
Of how the way they see us
Affects the ones like you and like me

It interests me that the way you and I related to each other
Is not exceptional when it comes to us
We are those below and those below are seen as
Sticking with our own kind

It is exceptional for one of those above to like us
To not mourn for our existence
This is praised as if it’s an achievement
It is just the way things should be

When you and I liked each other
Nobody praised us
If they took the time to notice at all
They either seemed indifferent
Or tried to split us apart

Not all of us liked each other
We had our own hierarchies
And prejudices
We were not some utopia
We are just as much a part of the world
As anyone else
And some of what happened was ugly

But we still saw each other
In a way the others didn’t see us:
We saw each other as we were
Not as we could have been
The sense of tragedy was entirely absent

One day I want to walk up to a nondisabled person
Wipe the tears from my eyes and say
“How tragic — you could have been disabled
And yet” (sniffle) “you had to turn out normal” (wail)
“Oh well. There’s always hope of a cure.”

What? You don’t see each other that way?
You don’t wonder (constantly) what might have been
If only, oh if only you were disabled?

It’s very simple:
Through our own minds
We are not lost and diminished
We are not those who would otherwise have been complete
We are real and whole
Because we are


1 If the inclusion of this line seems offensive, please read the third comment on this post. I included it because the constant recitation of this line can be part of an overall pattern, that came up in a discussion between me, a nonspeaking boy, and his mother. If you use it outside of that overall pattern, I’m not talking about you. But the fact that the line is repeated to the point of cliche does mean something, and it’s not always something innocent. I also don’t mean in any context that it’s wrong to teach or learn those skills. But it can sometimes be part of a distancing, fear, and even hostility towards people who for whatever reason don’t have those skills, a sense of “If she had turned out like you, it would have been awful.” Again, if you truly don’t have that fear, I don’t mean you.

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

22 responses »

  1. I think this may be the first time I’ve ever been bothered by something you’ve written.

    I’m a parent. I’ve spent a vast amount of the last 9 years of my life, and will, I hope, continue to spend a vast amount of many years more, on the task of helping an infant become a person who can take care of himself. That’s what being a parent is.

    What am I supposed to be but proud when he makes achievements towards that goal? Does my pride have to mean that I despise people who haven’t made those achievements? Is it impossible to be glad about an ability without scorning those who don’t have it?

    What would you consider adequate acceptance? Should we not have toilet trained him? Should we not be trying to help him overcome his sensory issues and eat a healthier diet? Should I not be teaching him polite manners?

    Parents are not machines that crank out babies. We are people giving up a great deal of time we could be spending on other things, money we could be spending on other things, in order to nurture a human being. I don’t grudge it – I love my child and this is what I signed up for. But it is a very natural thing for me to have a lot of feelings associated with being a parent. It would be ridiculous and unfair to ask me not to.

    How can you on the one hand criticize a parent for never visiting their child and on the other hand criticize them for being proud of their child? The one thing we can never, ever be is neutral about our children.

    I understand and agree with most of your points here. I respect your intelligence. I respect your dignity as a human being apart from your intelligence. I would like you to have some respect for my feelings.

  2. I know you say that the end of this post is not poetry, just a way to deal with language at a given time. But, isn’t that what poetry is? Isn’t poetry just a way to deal with language at a certain time and to convey a certain idea? To me, this whole post, from beginning to end, except for the explanation in the middle separating the two parts, seems very poetic and beautiful and true. Of course, my view might be skewed by the fact that I just spent an hour reading and editing a friend’s poetry for his creative writing class before reading this post. Also, I love this part the most:
    One day I want to walk up to a nondisabled person
    Wipe the tears from my eyes and say
    “How tragic — you could have been disabled
    And yet” (sniffle) “you had to turn out normal” (wail)
    “Oh well. There’s always hope of a cure.”

  3. willaful: I actually anticipated that this particular line would cause problems. I included it because of a long discussion I had with another parent. First off, no there is nothing wrong with teaching people to do things, nothing wrong with possessing those skills, nothing wrong in some ways with being proud of those achievements. But I had just spent a week with a boy who didn’t achieve those things, and his mother. And we were somewhere where that one line had been used by about ten separate parents in a row, somewhere where both the boy and I had never been quite accepted, because of our lack of having achieved (or sustained if we did once achieve them) at least some of those things. And in that context the constant emphasis on pride in achieving those things, and in particular the horror people had of not achieving them, took on a rather ominous flavor and all three of us felt it. That particular line is repeated to the point of a cliche by both disabled people and their parents. And it’s often accompanied by an assumption that it would indeed have been terrible if the effort of teaching had not resulted in acquiring those skills. And by a fear or even hostility, or a distancing, from those who either didn’t acquire those skills or who acquired and then lost them.

    You may not have been aware this happens. That’s fine. If you honestly don’t feel that way, that’s also fine. But there are people where the constant reciting of that line means something worse than it appears on the surface. Where that line is one piece of an overall pattern. If that’s not you then I wasn’t talking about you, and I’m sorry for making it look that way. I am going to add a footnote right now so that hopefully other people won’t misunderstand. I probably should have clarified it as I was writing it but I didn’t know how until I saw your comment.

    As for how I can criticize parents both for neglect and pride, it’s not that simple. I never said pride in your child is bad. I said that in one particular context, one particular expression of pride for one particular reason can be part of an overall pattern of distancing, fear, and/or hostility. That’s completely different than saying that every possible expression or feeling of pride is terrible. Characterizing what I said in such a broad and absolute manner is neither accurate nor fair, even if I had meant that every time a parent says such a thing then they are wrong. It’s all about context. Just because abandoning a child is wrong, doesn’t mean that every single possible seemingly positive feeling felt by people who don’t abandon a child is innocent and prejudice-free. Part of what I do is examine how feelings and reactions (in both disabled and nondisabled people, both parents and nonparents) can sometimes actually stem from less than pleasant ideas, rather than just appearing from nowhere. That’s different than disrespect for the people who have those feelings, and I don’t consider myself exempt from the sorts of feelings or thoughts I see as stemming from problematic places. It’s a pretty universal thing.

  4. Something similar happens with some children of elderly parents, too, when it’s considered to be the best thing for the parents to be put away, and the children say they don’t want to visit the parents because they don’t want to see them that way, they want to remember them the way they used to be, and what good would it do anyway since the parents don’t even know who the children are anymore.

    Some people have a messed up reaction to disability and have a hard time accepting that their loved one is who he is right now, regardless of what might have been or what used to be.

  5. I’m a non disabled (well, we’re all disabled in some way, aren’t we?) mom of an autistic son.

    I’ve had some of those feelings, those “what if’s” and “if only’s”.

    Because of blogs like yours, I am glad to say those feelings have been traded for a sense that this is who he is, and who he is is great.

    Thank you.

    PS
    I’ve long said that one of the things I admire most about Chico is that he is unable to judge anyone as harshly as he’s judged every day.

  6. It’s an interesting discussion, and it made me think, that’s for sure. I don’t have those attitudes towards others, but I have them – to a dangerous point – towards myself. And it’s something I’m trying to fix, but seeing them in this larger context is helpful in reminding me that it’s not just me, that there are outside reasons I might feel this way about myself. Thanks for that.

  7. I come at this question as the autistic parent of a neuro-typical child, so I can view it from at least two angles. As an autistic mom, I’ve never paid much attention to “milestones.” It’s possible I haven’t because my daughter reached them at typical ages, but it just never made any difference to me whether she would or not. I don’t put a lot of stock in one-size-fits-all medical models. She’s my kid, and whoever she is, that’s the kid I signed up for. To have a kid and assume that the child will be typical (and remain that way) seems very odd to me (but then again, I’m not typical).

    As a mother, though, I can see where some of the neuro-typical parents are coming from. When NT parents of autistic kids say some of the things you’ve listed, disabilism is often in clear view, the speakers are absolutely wedded to their ideas of “normal,” and it’s clearly destructive. However, I’m beginning to understand that for other parents who say the same kinds of things, the more basic (and altogether unspoken) fear is that the child will grow up in a world that is hostile and uncaring–and will live in that world after the parents are gone. Every parent of an atypical child must wonder “What will happen to my child with no one to advocate for them, with no support systems in place, with no one I can really trust?” It’s a parent’s worst possible fear. At almost 52, I am beginning to have the same concerns for myself, and sometimes, I almost literally shake in my shoes over it. What happens if my husband predeceases me? Who will help me navigate? Besides my daughter (who is 17 and getting ready to start her own life), I have no family at all. I can set up all the support systems I want, but at the end of the day, it’s all very tenuous.

    Of course, parents should be actively working to change a society that makes no safe, honored place for their children, and many of them do. Others just become immobilized in a state of fear, I think, and others never liberate themselves or their children from their fantasies of “what if” rather than the reality of “what is.” The answer, of course, is not to try to change the children. The only way to go (in my opinion) is to fight for an inclusive society. I hope that more and more parents get to that point.

  8. BADD is an interesting event for that reason. In the past couple of years, more and more parents of disabled children have spoken out in similar ways. Even as they advocate for their children’s rights, I often find their perspectives difficult to manage from a pure disability rights point of view.

    I wait for the world where there is no “but, even though, despite ….”

    I work for the world where we are seen as whole just as we are.

    WCD

  9. Thanks for your thoughtful response to my comment. I was feeling a little emotional when I wrote it and was more reactive than I might normally be. I do see your points.

  10. “Every parent of an atypical child must wonder “What will happen to my child with no one to advocate for them, with no support systems in place, with no one I can really trust?” It’s a parent’s worst possible fear.”

    Yes, very much so.

  11. Regarding the “proud that [child] developed [skills]” thing…sort of a (possible) aside, but one thing I’ve noticed is that in some contexts people seem to be trying to steer me toward presenting myself as “proof that autistic people can accomplish [x]”. And something about that has never sat well with me.

    It’s not that I am not happy to have accomplished certain things (like, say, going to college), or that I’m offended when my own parents express happiness about my accomplishments. It’s more that I know very well that many of the things I’ve done have been sort of…extremely dependent on a whole lot of variables being lined up in precisely the right ways. I mean yes there were some aspects of my brain that made some of what I’ve been able to do possible. But I also know plenty of people with very similar ability/disability sets who have NOT ended up doing some of the things I’ve done, just due to luck or having different interests, etc. And this is just completely clear and obvious to me, as is the fact that there is no law anywhere that the only things that count as “worthwhile accomplishments” are, or ought to be, the same for everyone. And when people act like such a law exists, whether intentionally or in terms of the assumptions they’re making, it just feels like this bizarre narrowing of reality.

    On the flipside of that, there have also been times when I have been on the receiving end of the “you’re such a disappointment because you CAN’T do [thing]” (not necessarily from my parents, but definitely from others in my environment at various times). E.g., I sort of inwardly groaned recently when I heard about some documentary in which a group of autistics in the UK(?) all learned to drive. And I don’t see a problem with autistics driving, nor do I think it’s impossible for all of us. But it has not been possible for me so far and I am not interested in spending my whole life feeling sorry for myself because I can’t drive, or wasting all my productive energy on endless hours of “practice” that I don’t have to burn up. And I am sort of sitting here on edge even now waiting for someone to forward me a link to that documentary or something with a note along the lines of “Hey Anne, these autistic people learned to drive…see, it’s possible! Don’t sell yourself short! You can do it, if you put your mind to it!”

    And so on. And while I know the sorts of people who would do this MEAN well, it just…grates, after a while, to keep being reminded of how I’m not measuring up to the “preferred human standard”, and that no matter what I CAN do, there will be whole chunks of it that don’t even register because people cannot look past what is supposedly “missing”. And I can only imagine what this must be like for someone with even fewer “typical” abilities than me.

  12. Another great post Amanda.
    I don’t think that I should take any more or less pride in having helped my disabled child to learn and develop than in having helped his non-disabled siblings. That is just the job description of being a parent.

    You’re right though. Your attitude to people, your ability to accept them is the right way. My prejudices are wrong and need to be confronted and demolished.

    The typical lines from parental accounts are all things I have read often and probably even written somewhere along the line. And yes, they are a result of disability prejudice and to frame them as expected and understandable reactions ignores the role of this prejudeice.

  13. Let me tell you — all too briefly — about Josh. He is 17, nonverbal, and seems to have great difficulty communicating even in ways that seem more “obvious”, like pointing.

    We’re not sure he understands that other people are other people, understands the idea of “communication” — he often seems to think of humans as unreliable machines which *usually* refill the juice glass when you thunk it on the table, or *eventually* fix more food when you open the fridge door enough times. (He is much better with computers and TVs; they’re much more predictable.)

    I don’t know if he’s happy relating to the world like that or not; he can’t tell us. He *seems* happy a lot of the time, but he also gets bored and sometimes intensely unhappy when there isn’t enough going on — and we can’t tell him what the options are, what’s planned, or what we *can’t* do even if we would like to, much less explain why… and he can’t tell us what he needs, what he would prefer to be doing, or what would be acceptable from the currently available options.

    We can’t explain to him that *this* time when we take him back to school, he won’t be going back to the “therapeutic foster home” we pulled him out of two weeks ago — which we think he now really hates, for understandable reasons, but of course we can’t be sure.

    If, in fact, he hated it, and could have told us this, we would have pulled him out much sooner. We weren’t sure if his resistance to getting out of the car was just resistance to change, or if he was specifically unhappy about the Home. The signals were mixed. And we were desperate to be able to go out of the house (one of us always has to stay with him when he is here, and taking him out places has always been very stressful for us because of our difficulties in communicating with him).

    And last Wednesday, we couldn’t tell him that the place we were going to be taking him (a) was *not* the Foster Home, (b) was *not* the hospital (we had to have him under a general anaesthetic to get his teeth cleaned, because he won’t hold his mouth open; it wasn’t a pleasant experience for anyone), and (c) seemed like a much better place for him than our house, never mind the Home, and one which we thought he might actually enjoy. We couldn’t tell him any of the reasons for (c), either, much less engage in meaningful dialogue about it and get his input.

    The most I could do was sing “we’re off to see the Wizard”, hoping there was a faint chance he might get the metaphor: we’re going to a place where we hope we will get what we need, though it will be a long trip and possibly quite scary at times. (We don’t know if he understands the plot of The Wizard of Oz, or just knows all the songs.)

    Nor can he let us know if he doesn’t like it there; we can only watch his behavior and listen to the reports from his caregivers and see if it sounds right — does it sound like a Happy Josh or a Not-Happy Josh?

    And of course we hope that they will be able to teach him some ways of communication that work for him and those around him. Maybe then he *will* be able to express opinions about hypothetical future events.

    I don’t think he is achieving what he wants in life. He is certainly capable of a great deal more, and he certainly shows plenty of signs of dissatisfaction. We don’t know what his limits are, though we suspect his condition (labeled “autism” but I suspect that is more a best-fit pigeonhole than a useful diagnosis) will sharply limit him in some ways. However, we do not know for certain which of his apparent limitations are inherent and which are circumstantial, so we try to keep his options open as much as possible.

    If I look into his bedroom at night and hope that one day he will be able to be himself and feel pride in his accomplishments, is that ableist? Or affirming?

  14. woozle: Depends a lot on how you mean it. The same words can be both with the differences in intent pretty subtle. I wouldn’t automatically take your words as you just put them as ableist, it depends on the pattern of context.

  15. I never know how to respond to it when these things are directed at me. It’s usually followed by repeated claims about how loved I am, but that really seems more like a diversionary tactic than anything. It’s like being hit in the face and then immediately being told how wonderful I am. That makes no sense.

  16. I’m glad you posted about this. It needs to be talked about.

    I haven’t been able to shake the fear that somewhere, deep-down, the non-disabled people in my life see me as a second-rate substitute for the imaginary non-disabled version who is more perfect, more love, and more wanted than anyone real could ever be. That they’ll always see me as the unfortunate replacement for someone who never existed. That my existence is a tragedy and a burden for them, and they’re only putting up with me because they can’t trade me in for the hypothetical non-disabled twin. That they’d trade me in a heartbeat if they could.

    I try to tell myself that they don’t think like that, but I see so many parents of disabled children saying the same things over and over again, and that’s what it sounds like. It’s good to know I’m not the only one who gets this feeling.

  17. About the pride thing, it’s confusing since we use the *exact same words* for two very distinct feelings.

    One is the sense of ‘in comparing this person to some standard of achievement, he/she came up higher than some other people do, meaning he/she is better, and I’m happy about this’. I think that’s what you’re criticizing.

    The other is the sense of ‘this person can do something they used to be unable to do, or can do something valuable in some way, and the beauty that is them can be seen through this achievement, and I’m happy about this’. Notice no mention of what others have achieved. This attitude doesn’t mean you don’t *know* how their achievement compares to others, but you don’t really care. That’s good pride, because it doesn’t take away from others.

    I’m proud that two months of karate has made me stronger and better coordinated. I’m still clumsy and weak, and I’m not learning karate as fast as an NT would with similar practice, but I am learning, and I’m proud. I’m also proud that I’m very flexible, that I can put my heel behind my head, kick high enough to hit someone’s chin, have my arm twisted hard behind my back without it hurting much. My father’s not as flexible as I am, even some of the black belts aren’t, and I don’t feel better than them because I’m so flexible. I’m proud of my father for finally getting flexible enough to touch his toes without bending his legs, even though that’s easy for me, because I can see it’s not easy for him and he’s making progress. And I know that getting more fit will make both our lives easier, that my father is less likely to have a heart attack and die soon if he does this, and that learning karate might help me do what I want to do in my life, and I’m proud of both of us for making this effort.

  18. “The other is the sense of ‘this person can do something they used to be unable to do, or can do something valuable in some way, and the beauty that is them can be seen through this achievement, and I’m happy about this’. Notice no mention of what others have achieved. This attitude doesn’t mean you don’t *know* how their achievement compares to others, but you don’t really care. That’s good pride, because it doesn’t take away from others.”

    Ettina, thanks for pointing that out! This is the pride and joy I feel when I see my son developing new skills and abilities, and though I can’t speak for every other mother of an autistic child, I know I’m not the only one.

    I only wish I could help my son appreciate his own achievements and stop constantly comparing *himself* negatively to other kids.

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